Episode Transcript
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(00:00):
So doctor Samia, are you allYes, I am Sylvia, and I
don't know if you have everybody whoyou would have liked to attend. Yes,
we have, we have a number. We're good. I believe we're
live in the studio on Science TV. So yeah, we're good to go.
(00:23):
We are catering for a very broadwhat do we say, Our guests
are everywhere, so we currently havea very good number, so we're good
to go. We can still themoney. Okay, So today, I
think that we really should have,as you say, what we call sort
(00:45):
of like listening and sharing sessions.I wouldn't want it to be sort of
like a one sided sort of talk. So I think that I would give
a very brief presentation around the perimatalrisks for epilepsy, meaning what are some
(01:11):
of the things that go wrong ineither during pregnancy, delivery or soon after
delivery that may lead to epilepsy.So don't focus on the data. It's
just one of the background things thatwe can talk about. And I think
that the rest of the session couldbe open to discussion to things that either
(01:37):
said or things that may be relatedto your own experience. I think the
rest of the session should just beabout sharing things that we know and things
that you know can be a benefitto the group of parents who are present
today. So so there is thata good plan? Yes, that to
(02:00):
you? That is that's a good, perfect plan. Then we can be
able to at least engage the parents, the ones who have that we have
a few questions at Kley, andI'm sure there are others who will.
They are engaging and asking, sowe'll be able to handle all of them.
So, yeah, we're going togo, okay, fine, I
will share my screen. Oh there'sno screen sharing. It's okay. Then
(02:22):
no problem, absolutely no, no, no, it's perfectly okay, it's
perfectly fine. Okay, No.It actually makes it easier to move faster
because I hadn't wanted it to bea long talk anyway. Mm hmm.
(02:44):
So basically, I think one ofthe things we as I said earlier,
the thing, the section of epilepsythat I wanted to focus on today is
about pery natal risk factors and theyso in Kenya, we're lucky that we
have had so many studies already conductedto try and find out how frequent epilepsy
(03:10):
is, what are the causes,what is probably missing is more studies into
outcomes for children with epilepsy as wellas out studies into the treatments that we're
offering right now and what it isthat can be offered to make things better.
(03:30):
So already we know that in Kenyawe have the prevalence of epilepsy at
approximately for one in every one thousandchildren, which means that if half of
our population is under eighteen approximately,and we have about forty seven million Kenyons
(03:51):
at the moment, it just meansthat we have a significant number of them
that live with epilepsy. So that'sone for every one thousand children that is
born in our country and approximately elevenout of those forty one their epilepsy will
not be well controlled. Data thathad been provided to us from Killifi a
(04:16):
long time ago into the district andnot so long ago we look at twenty
ten approximately. It just showed thatperinatal events, that is, things that
may go wrong either close to delivery, soon after delivery, or during delivery,
they contribute to about five percent ofthe cases of epilepsy. So that
(04:40):
means that mothers who want to goprolonged labor, mothers who have say bleeding
in a late pregnancy, during delivery, before the baby is delivered, and
also i'd mentioned prolonged labor where thebaby probably comes out without breathing. Those
(05:02):
children are at risk for epilepsy.So the other factor that we know in
our country has contributed significantly to theoccurrence of epilepsy is the presence of what
we call nonedal sepsis or infections inthe new bond. So immediately a baby
(05:26):
is borne, we know that prolongedly, but it is not a good thing
because the baby then remains in thebath canal or close to the bath canal
for longer than is necessary. Duringthat time, they could inhale secretions from
the bath canal or contaminants from thebath monitoring process. As people or as
(05:51):
healthcare workers monitor that process, contaminationcan also happen and the name it then
or the new born baby and uhinhale those infected open terminated secretions end up
with an infection. And because theirbrain is one of the most mature parts
of a baby when they're born,then the brain is very vulnerable to infection
(06:16):
and infections around that time have alsobeen positively linked to epilepsy in our country,
So it's not that the ne neediusyou know, sigious that happened in
the newborn period about half of themas well as a result of infections at
that time, so depending upon whereyou live. The other factors that have
(06:43):
been identified include malaria. Malaria inthe mother during say the last trimester,
it changes the way the body functions, and then that may also get problems
like seizures in herself. She mayhave anemia while she's having malaria. She
(07:04):
may also contract other infections, includingbacterial infections. So malaria in pregnancy,
especially so the last trimester, canlead to preterm bath where a baby is
born before they're quite ready. Andwe've also talked about other complications in the
mother which may lead to epilepsy inthe child. For example, if she
(07:28):
has a seizure herself during a malarialinfection, that in itself interferes with blood
supply to the brain of the unbornbaby, and that baby then may develop
epilepsy in the final analysis, sosoon after delivery. Even if everything goes
well once again, there are certainfactors that can lead to epilepsy in a
(07:54):
small child or even in later life. Once again, infections are important.
They contribute to another maybe twenty percent. If a baby soon after delivery has
infections or before age one has problemslike meningities or what we call many going
caphalities, that is infection of thebrain itself class it's covering, or unfortunately
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it gets conditions such as tuberculosis oreven say va malaria. All these have
also been known to lead to contributeto epilepsy. Of course, there are
other factors that are not related toinfection. For example, if a baby
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is born with a brain that isnot formed properly, which is something we
discover during the course of investigation ortrying to find out why the baby has
epilepsy. Brain malformations are not verycommon, but they contribute to about five
to ten percent of another five toten percent of the causes for epilepsy or
(08:58):
can Then we also have inherited problemssuch as sickle cell disease, which is
quite common, say in the coastalareas Western Province or what you called Western
Province in Kenya, as well asa nyanza. We have certain groups in
(09:20):
our country to carry the genes forpsyco cell disease, and so if a
young child inherits two of these genesfrom both parents, they may end up
with a severe form of siicle celldisease, and as a result of that,
then they may end up with epilepsy. Then finally we have and one
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of the reasons why people get epilepsyin relation to cico cell disease is because
cicle cell disease in itself can alsocause strokes. They can cause stroke.
It can cause stroke in a youngthat is, a stroke is basically an
interruption in the circulation of the brainor the brain, the blood circulation in
(10:07):
the brain for this young child.And then once the stroke has happened,
then part of the brain may notsurvive. And if those cells die and
it forms car tissue inside the brain, then that's cartersue is active and actually
causes epilepsy. Then the other commonproblem we have in our country is trauma,
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basically traumatic health ahead injuries. We'vehad of stories where children are not
well treated at home for various reasons. They may undergo non accidental injury.
For instance, if a child isinvolved in a fight with an adult or
falls from a height, which isnow accidental injury. And some the commonest
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forms of an accidental injuries involved borderaccidents. You've seen around children being carried
around, they have no helmets.They're involved in these accidents that in itself
can also lead to epilepsy in thefuture, even if the child comes out
of that episode without many other injuries. Road traffic accidents also important. We
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have seen parents sitting in the frontseat or driving with children with them at
the wheel. This child is notbelted, so when an accident happens,
the child suffers even more than theadult because they're smaller and so they tend
to be thrown around quite a bit. We have received children who were collected
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very far away from vehicle in whichthey were traveling, because if the windows
are open, then the children justfly out if they're not belted. So,
once again, another ten percent ofthe children who have epilepts in our
country it may be related to roadtraffic accidents. Then, finally, we
have another large group of approximately thirtypercent of children where despite our best effort,
(12:20):
we cannot always pinpoint a cause forthe epilepsy in this child. And
a lot of times that is becausethe child carries a genetic change which then
predisposes them to seizures. So thisgenetic change could be that it has happened
(12:43):
for the first time in that familyin that child. In some instances we
find that there are other family memberslike maybe cousins that is, maybe this
is the nephews to the parents whobring the child, brothers and sisters that
is, un as and aunties tothis individual child, and sometimes even grandparents.
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So for genetics, it's possible thatthe MRI brain or any other form
of image you do may be normal. It is possible that other investigations such
as an EEG may show communication problems. So genetics genetics basically plays a very
(13:26):
important role in the you know,in the occurrence of epilepsy in children,
and sometimes it's very buffling for familieswhen they come to us and they ask,
what is the problem, Why doesmy child have this issue? The
tests were normal, So a lotof times you find that, yes,
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this genetic aspect is the main contributorto that presentation. So in the world
currently it is possible to evaluate forgenetic problems. It's just that it's quite
expensive in our country because these testsare not done very frequently. When you
do access them, we're looking atabout one hundred and fifty thousand kind of
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shillings for a genetics panel and thegenetics panel would also vary because initially we
only were able to evaluate like aboutone hundred genes which are frequently associated with
epilepsy, and these days we havepanels that evaluate up to four hundred genes.
(14:33):
So depending upon availability. The factthat even the genetic test comes NOLT
negative, it doesn't mean that thatis not the reason. So finally,
I also wanted to come out otherproblems that a child may have that may
contribute to epilepsy but occur outside thebrain. For example, we have observed
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children and genital had this you've hadabout children are born with a hole in
the hat, a number of themwill develop epilepsy. And we think that
it is because when the brain isbeing formed, when you have an unusual
formation in the hat, that tooaffects how the brain is oxygenated or changes
(15:24):
blood supply to the brain. Itcould be episodic, it could not.
It may not have the right oxygenconcentration. The many reasons why that can
happen. So also body malformations outsidethe brain have also been associated with epilepsy.
This is a small number, butit's an important thing to know because
sometimes families of children, like thosethey sit on wonder why is it that
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this child has more than one problem. Then finally, we hadn't also talked
about some other conditions in pregnancy thathave been found not just in our country
but also in other places to contributeto a small percentage of children with epilepsy.
I'm talking about mothers who have diabetes, the lytas or soca as some
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people would call it, especially sowhen it is poorly controlled, and even
then that is they keep having veryhigh sugars or very low sugars. Such
children born of moms with such problemsthey can end up with epilepsy. And
then finally, also high blood pressureand pregnancy is also one of those factors.
(16:37):
So I think I was stopped there. And as I'd say, they
did not want it to make ita long talk or a very technical talk.
I just wanted to give you someideas about the things we already know
in our country contribute to epilepsy.Thank you, thank you very much.
That so, yeah, I alsohave learned. I thought I have bread
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vastly, but at least I'm learningevery day, and it's something that many
of us experients actually wonder what happened, what went from But I'd like for
us to touch a bit on thedifference between a convulsive disorder and epilepsy and
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also the different types. Because thereare moments you hear parents saying my child
is twitching, my child is behavingfunny and zoning off. Could you just
like guide and try and put painta picture for those who maybe might not
be conversant with what we were talkingabout, like what happens in the body
during that time, so that atleast we can enlighten maybe that those who
(17:44):
do not know actually that the childis going through a seizure and yet it
is happening. Okay, The correcttime to use is actually epilepsing once somebody
has had at least two events morethan twenty four hours apart as a result
of abnormal brain functioning, and theyend up with some of the science or
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symptoms that you point out, wherea child is no longer himself. He
may look confused, he may haveeye flattering, he may have staring,
he may be but the hallmark ismostly unresponsiveness or altered responsibleness. We have
very many types of seizures. Themost important thing is to be sure that
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there's nothing else causing this presentation.So that is why evaluation or investigation is
important, because once we know thatthe only factor contributbuting to this presentation is
abnormal brain function, then we arevery comfortable toblit epilepsies. Somebody can do
(19:00):
use a responsiveness for many reasons.For example, if you're having an abnormal
heart function or an abnormal hat rhythm, put get an episode of fainting,
which we cause this things. Andsometimes people use convulsive disorder loosely, you
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know, to me and a situationwhereas somebody has lost consciousness or somebody has
had an episode of altered consciousness.So convulsive disorder and sometimes even seizure disorder
is basically just a loose term.But epilepsy is specific and it encompasses very
many seizure times. Some children willfall in what most people would understand.
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You have had to be you knowwhere you fall, you shake both sides,
you have saliva coming out of yourmind. A few people may even
have in continents, but in childrenit's not always like that, even for
adults. But because we are childrenspecialists, wells confine ourselves to children.
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Children may have nothing else but justtearing and flattering, and they continue with
just an interruption in their regular activity. You see that the child is not
with you and then snaps out ofit and goes on. So we have
that kind of seizure type. Thechild may say I feel funny, I
(20:32):
hear things, there's something with mystomach, and maybe then they keep quiet,
they make sure how look like they'rechewing something. You cannot make them
respond at that time. It usuallywill last about a minute or less,
and then the child continues. Onceyou see something like that, sometimes even
as a parent, you wonder whatdid I just see? Did it actually
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happen? So there are many seizuretypes, so to say, there's some
who just get shaking and acting ononly one side, and yet they're fully
alerted. They can even tell youwhat they're feeling, what is happening.
They're trying to hold that hand,they're looking very scared. They can still
talk to you, but they arestill having a seizure. So children will
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have different seizure types. But onceyou can definitively report that it happens the
same way we've had at least twotimes it wasn't cost by anything, then
most likely that is epilepsy, andthat is the correct term. So we
for us who are trying to consoleourselves saying my child only has a convulsive,
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we've better embrace it, because everylepxic makes it very heavy, It
makes it personally, it just makesit this every thing, especially for us
whose kids have now the convulsion asa core MOVID like when you have autism,
then you have convulsions, or youhave syllable palsy or go on syndrome,
and then now you have also decisionson top of that. So where
(22:00):
we add this other heavy word onit, it just feels like dear erld
doing to do there so safe thatway and ensure that we have what you
call this that as a safe worldfor lack of a better world. And
then the other thing about the effectsof when now the children have prolonged seisions,
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At what point as a parent shouldlike panic Apart from when you say
it like involuntarily, if it comesmore than once or twice in a specific
period of time, at what pointshould we panic? Because you have moments
where we have the short episodes,We have the moments of whether the child
stays in a days and it's blank. Then on top of that we find
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the time where you have a sitterfor a long time and after which the
child either passes two or peace.And most of the time you're told that
is like a danger sign. Whywould you want? What is that all
about? Like what happens to thebody of the baby? I have points
that its results to the kindly justenlightness of that. Okay, first and
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foremost, as the kere giver ofa child, you're you're advised not to
ever panic. Panic is not agood word. It's not a good situation
to begin. And the reason whyI say that is because your child is
actually dependent on your own stability fortheir safety because they themselves in that situation,
(23:32):
they cannot protect themselves. So Iguess the correct way to or rather
what you're asking is when do Ineed to take action? So basically,
once a seizure has started, thereare only two other things that can happen.
That one, it will terminate byitself without any medication. And if
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it's going to terminate it by itself, usually that happens within the first three
to five minutes. So if you'rehaving seizures that are happening two or three
times in a day, you reallydo need to go to hospital, right
because once a child has had morethan one seisure in a day, that
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is, you had one, forexample, at eight am, you've had
another one, not about nine o'clock. You're now looking at a third one
at ten o'clock. It is verylikely that these seizures will continue unless something
else is given. So the othersituation is where a child continues with having
seizures for longer than five minutes.Five minutes is universally or globally accepted as
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the outer limit by which a healthcareworker really must intervene. Any seisure that
goes beyond five minutes, it's likelyto go on for much longer, so
seizures which are less than lasting lessthan five minutes. Usually there isn't much
injury to the brain that happens.But the longer a seizure goes on,
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the higher the likelihood that it willcause permanent changes to some of the nerves
or some of the neurons as wecall them in the brain, or that
other changes that are detrimental to thechild may happen. For example, as
they're choking and coughing, sometimes thesecretions will go the wrong way. Understand,
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and so in decision that goes onbeyond five minutes, you need to
be concerned and be making your wayto a place near you where they can
assist and decision. It usually doesn'tIt doesn't have to be your regular hospital,
because your regular hospital could be veryfar away. But we get concerned
about seizures that last longer than fiveminutes. So regarding the initial interventions when
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a child has had a convulsion ora sisure, so to speak, it's
to lay them on the left side, allow whatever's in the mouth come out.
Do not put anything into the mouth, don't try to feed them,
don't put in a stick, don'tput in a spoon to try and protect
them from biting. The time,the tangue is very mobile. It's really
(26:17):
bitten and even if they right intendsto have to heal like you could actually
cause more injury to this child byputting something in the mouth. So don't
put anything in the mouth. Makesure there's nothing around them that can injure
them. Make sure that their faceis they're not facing down into a soft
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pillow, put them on a farmsurface, let them lie on their left
side, lose them any tight clothing, and if you're in public, just
ask people to give him or herspace. Then after that, move the
child as soon as you can toa safe place, and if the seizure
is clearly ongoing beyond five minutes,you really should be making way to the
(27:00):
hospital. And as I mentioned earlier, also children who have multi proceidures in
a day, whether they're in treatmentor not, I think those are children
who ideally should also be attended to, so now then later, also depending
upon how well the mother or theparent understands the child. Very long answer,
rights, it's long, worthwhile,precise and exactly what we need to
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hear. Because when in school,when you're looking at the first age that
they've given, they always say,when someone gets a kind of electic attack,
put them on the side to theschool in the mouth. So long
in school, that's what they're taught. So that that means we need to
have our education as part corrected inthat. And yes, I can see
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we have someone's Patricia has Patricia hasa question. Patricia, Yes, please
come more than ask. Okay,thank you so much, saving doctarry.
I just wanted to inquire idea inhere that caritation on infantaise pass zooms.
I was to just know the differencebetween I s and the epilepsy or is
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it is epilepsy or is it aseizure? Where do we put it?
Okay, okay, thank you Patriciafor that question. Today, the brief
discussion we had was just about causation. What is it that causes epilepsy?
What do we know already about that? So today we did not discuss what
(28:32):
we call epilepsy rooms And what you'reasking about is an epilepsy syndrome infantaus pasms.
It's basically an epilepsy syndrome, meaningit is a group of characteristics that
tend to occur in certain children consistently. So, yes, it's a form
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of epilepsy. And this will betrue children who are usually six months and
below. A lot of times youwill find there was a problem either before
birth or during birth. For thevast majority, when we do the imaging
or the pictures of the brain,very frequently we will find a problem,
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meaning either the brain doing form properlyor there was injury for whatever reason.
And then the seizures tend to becharacteristic. They tend to have this forward
sort of bending bringing their hands upand the legs, and then they do
that in clusters. The baby lookslike they're in pain because they cry after
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that, and it can happen manytimes in the day. Then if the
baby had already started smiling, cooing, looking at mom, holding the neck,
or even sitting, you'll notice thatmost of them regress. Then when
you do the EEG a lot oftimes you will find a specific pattern,
very disorganized, that causes worry evenfor the clinician. So that's what defines
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a fine tiles puzzlet. It isa specific form of epilepsy. Okay,
okay, I know being in thegroups with a lot of the care givers,
I see a lot of that spasticand all that. So those are
types of epilepsy or are they justtypes of how it presents itself? Like
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how do we clarify that? What'sthe difference of the sperasans and now the
full body convulsions. Because there isa parent who is saying like one side
of the child is the one thatjust reacts like the jacks are one side,
and they talk about the eyes twitchingconstantly. And also like for my
child, I notice sometimes when he'sasleep he just does like jacks like his
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I'm trying to find the right wordto explain it's like he got startled.
He's asleep. So of course forus as mothers are like, oh my
god, what's going on? Youknow, especially when you have a history
of convulsions and he's made when thereis things like February convultions. Just take
us through about these different types sothat we are able to maybe support other
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parents that we know may not beaware, because we also found out that
their parents and caregivers who are notaware that actually that is epilepsy presenting itself.
How do we identify the Okay,I think really, I think I'll
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go with the first question you askedabout the difference between fantise posms and spasms.
So, as I said earlier,infantius posms are quite specific. The
child presents like somebody in pain.They will probably bring their head down,
their hands up, their legs areand this can happen several times within a
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few minutes, and then it stops, and then the child starts all over
again. It's a quite a scarything to watch. It causes concern because
this moum fails like her baby ishaving tammy eggs. And if they are
observant, they will also notice thechanges in their baby once that starts,
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and that is why it's a veryimportant form of epilepsy. Forums as healthcare
workers, it is important because childrenlose milestones, children move backwards, children
lose abilities, and unfortunately it's associatedwith the permanent changes in the brain.
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Even if the baby is treated,it's possible to stop those kinds of scisures
using very specific medications which are noteven used for other forms of epilepsy.
And unfortunately, those are babies whoeven if the scisures stop, they tend
to be behind their appears because whateveris causing an infantile spasm is usually a
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serious problem. So that is oneanswer then for spasms. Spasms are things
that we see in children with cerebralpalsy. For example, if you bang
a door and don normal circumstances,you know you will wonder what it is
that has happened. But because theregulation of the muscle activity in a child
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who is already known to have cerebralpalsy is not well regulated, so you
may find that they actually are notjust startled wondering what's happening in the environment.
They may also have certain sudden movements. But how we differentiate spasms from
seizures is that one a spasm alwaysis caused by something. I've talked about,
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a sudden noise, moving the babyand dressing the baby, changing the
baby's position something. It is somethingyou have done that causes the spuzzm.
And one of the ways a parentcan differentiate that from a seizure is that
spusms, once you hold the babyor you hold that hand that is all
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that arm that is having the unusualmovement, it usually stops and usually stops
completely. But seizures you cannot stopthem. As I mentioned earlier, it
does not stop. It just continuesuntil such a time when either the seizure
itself dissipates or the baby is givenmedications. So usually that's how to differentiate
as puzzle from as seizure. Aspuzzle is caused by something, you can
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actually make the child have a spuzsmivenin clinic, because you just have to
do something some thing and then apparentfor that. For spusms, we generally
don't have treatment. Occupational therapy helpsreduce those puzzles, especially so as the
muscle becomes less tight for babies whoare also on muscle relaxant medications. They
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also tend to have. That helps, Yes, that that really helps.
At least there is guys. Therethere is another question in one of the
caregivers book where the mother has askedwhen the jacks start in the leg and
then progressively go to the upper livingshe's concerned and wondering does the child have
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pain during a convulsion? This issomething that we're aware. Are they in
pain or what's caused the crime?After the blacking out? And you know,
because I know, like for myown child, he will black out
and sleep for like an hour afterthat. What was the exhaustion? Is
it? Exhaustion? Is it?And then all the crime? What?
What? After? You get mypoint on that one? So this one
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one is it painful? And twobecause of course we see for us we
see this the child crying, soof course there is a discomfort. So
is the jacking painful? What exactlyis going on? And the what do
you call this? The reactions areafter where they sleep or they become mobile
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for a very long time. Whatactually just goes on to make it that
way? Okay, So the basicproblem when children have epilepsy is that the
neurons are not well coordinated so tospeak. Right now, we're holding this
conversation because the brain selectively allows themuscles that produce sound to work, whereas
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the muscles that allow you to walkare sort of not muted, but they're
not activated at this time. Sowhen somebody has a seizure, that sort
of coordinated way in which things existis completely disrupted. It's like the way
we're holding a good conversation here,we take tinds, we try and understand
each other. During an epilepsy,it's like all the neurons are firing at
(36:59):
the same time in a chaotic anddisorganized fashion, and therefore their presentation of
what you see is many unusual thingslike the staring, the shaking when you
actually shouldn't be shaking, their inabilityto respond, or even children who say
very odd things during seizures and thenthey're confused, and sometimes because of the
(37:25):
abnormal brain activity, they will cry. Crying could be as a result of
fear that they feel because some partof them is still aware that something is
happening. It's also scary. It'smostly a scary event, but the crying
is usually not because of pain.They're not in pain. It's just that
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whatever is going on in their brainsat that time is basically abnormal. They're
not supposed to be crying. Forexample, the children who cry in their
sleep. The cream right, it'sas a result of abnormal brain activity.
It's not that the child is inpain somewhere. And once this abnormal brain
firing dies down, then the brainis exhausted, then they go That is
(38:10):
why they go into a deep sleep. At that in point in time,
they're not capable of doing anything elseapart from maintaining the vital activities such as
briefing. You know, the heartis beating, They can't really do anything
else. So it's a sort ofit's because of exhaustion of the neurons.
(38:31):
So they go into sort of likearresting state, and therefore you're not able
to wake up your child, andyour child at that time is not able
to do it. So they're notin pain. It's the crime is as
a result of abnormal brain function happeningduring the session. Wow, this is
(38:51):
a masterclass well trying to break itdown, but that's what it is.
And I think that is exactly whywe do this, and that's why we
call it neuro digest, because wewant to digest everything of what is going
on and break it down. AndI appreciate all the knowledge that you're sharing
because now, at least because sometimeswe end up breaking down imagining that our
(39:15):
children areying so much pain there isnothing I can do for my baby.
It renders you to feel like you'reuseless at that point, and as a
parent. So we have Mina whosays she gets decisions herself, and she's
wondering about epilepsy and asthma I requestedfor her or she has both conditions,
(39:37):
so she's wondering if asthma in itselfleads to epilepsy. And she also says
that when decisions come, it createsa lot of fear. So I think
it's an aura for her. Ithink it's an aura. Right. You
can expound on aura and all ofa sudden things. But Thanklena, that's
(39:59):
a very helpful question. Those aretwo independent conditions. There are very many
people who have asthma and they donot have epilepsy, And there are many
people with epilepsy and they do nothave asthma. So you will find yourself
needing to see like two different doctorsto help you. So of course there
(40:21):
are people who are quite convers likephysicians and nutritions quite conversive with both conditions,
and so they may be able toguide you. One does not lead
to the other. There are twodifferent systems. One is the the what
do you call the respiratory system orbasically the chest, and the other one
(40:43):
is the nervous system. So thoseare two different systems. Those are two
different conditions, and if both ofthem are needing active management, you know,
it just calls on you to actuallyactively manage both. Luckily, for
some people, asthma can be seasonal, like during this time when it's a
(41:05):
bit colder. You can see theway I'm dressed. It's a bit cold,
they may have more asthma episodes,whereas epilepsy is very unpredictable for majority
of the people, decisions can happenat any time. So, Nina,
thank you, that was a nicequestion. All right, thank you the
terry. So we have a questionfrom a parent who's saying that the daughter
(41:30):
is yes, yes, I havea question. Yes, yes, m
h to askty mm hmmm. Arethe particular types of food that tees us
(41:51):
actually not really, no, wedo not have uniform types of food that
cause seizures. However, alcohol inour adolescents and adults makes it much easier
for them to have a seizure otherthan you know, undernomalus circumstances, it
(42:13):
makes it Alcohol is one of thosethings that makes it more likely for you
to have a seizure than not.Having said that, we know there are
certain foods which if you take inlarge quantities, you're less likely to have
seizures. Just removing touches from thediets of many children with the poorly controlled
(42:35):
epilepsy that means epilepsy that is notresponding well to medication, that in itself
has helped reduce the number of seizuresfor most children. So it means that
they'll be taking more of animal protein, maybe foods with oils like coconuts and
other nuts, maybe more of eggs. So that to the contrary, there
(42:59):
are foods we know, including thingslike avocado fish, especially that if you
take them in large quantities and reducethe statues, you're less likely to have
seizures for your individual child. I'vehad a a mom who says, anytime
a child takes cold food, hegets a seisure. Our postulation on what
(43:22):
we think is that maybe when thischild is exposed to cold, they may
have a reaction in their body,or they may be a bit more sensitive
to cold weather cold foods, andso the way the body reacts to that
change, they end up with acision. So we don't think it's the food
itself, but what she tells usmakes us think it's more about the temperature
(43:45):
of the food and how the bodyreacts to it. So we're not aware
of foods that cause seizures. Okay, thank you, but I've learned something
that some can be treated. Yes, yes, yes, it's not but
a trigger, so there is adifference. It's not causing it, but
it can trigger it. To startthe episode, Yes, somebody, sorry,
(44:15):
I might have got you confused.My name is Nina and I started
the Purple Bench initiative. It's annice to meet you too, So,
doctor Pauline, my my question wasabout epilepsy and seizures. Was that when
I was much younger, much ofthe time I was found lacking oxygen,
(44:37):
whether it wasn't in in nursery school, out turned blue and then you know,
shortly after is when my seizures actuallystarted. So when that happened and
I was checked and found out thatI had epilepsy. Then we're kind of
correlated, is to you know thatthe asthma, because the asthma was bad
(45:00):
at that point, and I thoughtthat maybe it could have been one of
the things that actually caused the epilepsy. O. Great, thank you for
the explanation. Correct, Thank youall right, Now, I just want
to take the discussion to now managementor decisions. Now, we always get
(45:21):
medication to try and manage decisions andthe whole epilepsy so that at least the
children can be stable. But youfind there moments in time when you're given
aid the multiple medications, and thenwe find at times people say that kids
react to some of the medication,that new behaviors come through. And we
(45:45):
also have a question also where there'sa parent who's saying that the daughter has
sippy and she keeps making loud sounds. She's wondering is there anything that she
can do to stop the noise?Because the child is a radio medication and
she's on three sets different sets ofmedications, so she's wondering, like,
Okay, what exactly is that home? Okay, Yes, I can see
(46:10):
the question from Catherine to everyone.It's a good question. It's something we
have seen. Basically, what thismeans is that decisions haven't responded fully to
the medications that these babies are well. As care providers, we generally try
(46:32):
not to ever stop until such atime when we find a combination of medications
that is suitable for the individual child. The management of epilepsy is what I
tell my residents is not a onesize fits all. We have children who
are very lucky in the sense thatactually eighty percent of the kids we see
(46:54):
will respond. We will respond appropriatelyto the first medication that we choose and
all the scisions go. We mayneed to make adjustments along the way that
they don't need any other medications.Then we have another group of patients where
even three or four medications do notcompletely stop decisions. That's not very common.
(47:21):
But what we would tell Catherine isthat somebody needs to review the medications
her child is on and try tosee if there is something else that has
not been tried apart from what shehas stated on the group right, because
now, over time we have discoveredor we have access to other medications,
(47:45):
I can name maybe four or fiveothers which are not on that list that
can be tried for her child.And if they're found suitable and to give
her better quality of sleep, stopthe screaming would be good. So yes,
I've had a child like that whoit was uncomfortable for the family because
(48:07):
the neighbors would hear the sounds atnight and come and ask what is wrong
with the child? Why is shescreaming? So it took us a couple
of months to change over one ofthe medications. Actually what we drop to
the film and we actually give ababy to the babbitt and that she's perfectly
final. So there are many otherswhich would have to be tried for this
(48:30):
specific child. What works in onechild is not necessarily going to work in
another. So some children react verybadly to rivertril. There are others who
cannot do without the river trail,so treatment has to be individualized. And
I think Catherine needs to find somebodywho probably can evaluate the medications and see
(48:52):
what else can be added or changedor removed so that the quality of life
for her child and the family isokay. Thank you Doctcharry for stepping in
for contry. The other question thatmost of us are always hopeful that at
some point their convulsions will stop andthe sad reality on the ground with the
(49:13):
current situation we're having, we're havinglack of access of medication. But we
find we are consulting amongst ourselves ascaregivers, amusing this is equal to this,
which I know is not a goodpractice that we should We shouldn't be
doing that in terms of what whatyour child is using would not suitably work
for my child. But when itcomes to the combinations and how long one
(49:38):
takes, I know it varies fromchild to child, but in your experience
in the many years, how longand what percentage do we say of children
actually eventually stop relying on medication tocontrol the convulsions. Okay, it may
vary also from location to location andthe reason for the scisions, but where
(50:01):
I work, about eighty percent ofthe children are easily controlled with one medication.
But you'll also find the term it'schildren who tend to have genetic causes
for their seizures. You know,the MRI brain will be normal, but
the you know, there are manychildren who within too. You know,
(50:24):
within two years the decisions have stoppedand medications can be de escalated for about
eighty percent of them. But wehave another group of twenty to thirty percent
who it doesn't matter what you do. You most likely end up with reducing
the number of seizures, but youfind that maybe occasionally in the morning,
(50:45):
the child will still get one,and therefore it becomes a discussion between the
practitioner and the family about what isin the best interests of the child.
To be honest, you can actuallystop all sisions in any child. You
can give so much medication or enoughmedication said that that child is not capable
(51:07):
of having decisions. Now. They'redownside to that in some situations is that
yes, you've stopped decisures, butyou're now not having a functional child.
The child is either too drowsy orthe behavior is not appropriate, and especially
so the drowsiness bit. We havereally potent medications that can stop all siges.
(51:29):
So once in a while we willsit and discuss with the family that
it is better that we give thisamount of medication. We know it will
not stop all the scisures, butat least your child will be happy,
able to interact with you, ableto play, interact to the other children
in the house, not be drowsyand drooling all the time. But they
(51:52):
will still have that occasional seizure inthe world rather than I give enough medication,
you're not seeing any sisures. Buton the other hand, the child
is not you know, is notreally with you. It's not functioning appropriately.
So it's a compromise. But beforewe get to that compromise, we
will have tried appropriately in proper dosesdifferent medications. So for parents to be,
(52:22):
you know, trying different medications withoutguidance for their individual child, it's
probably not a very good idea.I know that we're not very many practitioners
in the country, but that isset to evolve because we have now started
training our own pediatric neurologists. Soit is possible that in a few years
(52:45):
to come that whatever it is youlive in the country, there will be
somebody easily accessible to you. Butin the meantime, please find somebody who
understands these medications and who can helpyou, even though it is during the
COVID time. Why I say thatis because during this time we've noticed that
(53:09):
a few children have gotten COVID,but the vast majority we have not even
admitted them. They have been managedat home because their illness is mild,
and the people who are getting severedisease are the adults. So please don't
fear to go to hospital, especiallyso for a child with suffering. I
(53:29):
do not know any hospitals now whohave closed their pediatric clinics. So the
advice to families is to take reasonableprecaution. Do not put masks on children
who cannot speak for themselves and tellyou that they're uncomfortable. Do not put
masks and children who are less thantwo years of age. You should wear
(53:52):
your masks, carry your sanitizer,Stay away from people who are coughing,
Try not to be in confined places. Is make your visits to hospital shot,
but please take your children for care. Wow, thank you. At
least we've touched on the cop becauseI know a lot of us would like
to do. That's a question weare struggling with. Do I go to
(54:14):
hospital? Am I at increasing therisk of now COVID? On top of
that, I know we've lost Welost the child the other day because of
convulsions in the middle of the nightand the effects of the cafew not knowing
what to do. I know we'renot supposed to panic, but naturally in
this case, you will panic withoutknowing what to do, also considering in
the financial duplications of COVID nineteen,so it's putting us can give us in
(54:37):
a very tight situation. I wantto go for that review, but can
I afford it because we have peoplewho are not even able to afford the
medication looking at the moment the wayLiberti is not available, but guys are
getting different prescription and it ends upbeing so expensive because it was affordable.
And now you're looking at the newprescription in something way beyond your budget.
(55:00):
So that those are some of thethings that are limiting factors cratified that now
can give us are being told ofhow to take this conversation forward, so
we have someone else asking, Shesays, thank you of Samia. The
discussion is very informative. Which isthe least acceptable number of conversions that a
child can get daily despite being puton medication like for drugs, Wow,
(55:23):
for drugs and the conversions are stillthere. Okay, I do not know
the name of the person because itsays techno sex here tale we will answer
the question. Our target when westart saying children is actually to have zero
four medications are rare in our clinic. Some years back before we had more
(55:50):
effective medications. Yes, a fewpeople used to be a four, but
we really try to use the twomost effective medications for an individual child.
So our goal is usually to havezero. So if you're not achieving that
on the four medications, then maybewe need to somebody needs to look at
(56:12):
the doses. Are all the dosesright? Are all the medications actually making
a difference for your child? Isthere anything else we can offer you,
like a dietary therapy or maybe ashort term steroid or a different kind of
medication. I think that if achild is having very many seizures well on
(56:34):
form medications, I think we needto rethink the whole situation. Is there
any surgery that can help. Sometimesyou're told no, sometimes you're told yes.
So I think that something else,you know, something needs to be
changed there, especially if the decisionsare very many and you feel that the
(56:57):
child's development is not okay. Italso depends upon the underlying problem for medications
of say around the higher side.I think there needs to be an evaluation
somewhere. Okay, So I hopethe parents has picked up from that.
Now. The other thing I havenoted is there any relation with especially for
(57:17):
the autistic children and triggers of convulsions, because you will find or a noted
do the reason past that once theyget to teenage, a child who has
not had a convulsive order before startsgetting it. Is there any relation as
to why this is happening, Yes, Sylvia. Medicine is very interesting.
(57:38):
I find it very interesting in thesense that when you're told that a certain
disease presents and progresses in a certainway, usually that's what happens. So
for our children with autism spectrum disorder, you'll find that when they're younger than
(57:59):
five years of age, only abouta third of them have epilepsy. But
once they hit teen age that flipsto about seventy five percent, fifty to
seventy five percent. Actually, letme not say seventy five percent. It's
actually a range of fifty to seventyfive percent. But yeah, but that
(58:22):
is what happens. You find thatwhen they're younger only a small proportion of
them have epilepsy, and as theygrow all that now children who will give
us to have epilepsy now have thedual diagnosis. It is not to be
because of ongoing maturational processes in thebrain and that is why that that observation
(58:43):
is made. As children with epilepsycontinue to grow, there are changes that
happen in the brain, just likeeverybody else. I mean, if you
sit and think about it as aparent, how you used to think when
you were sixteen years of age andhow you think when you're twenty six is
very different. What's changed is justmutual processes in your brain. So as
a result of that, and sometimeschanges within the neurons themselves, then they're
(59:07):
more likely to have epilepsy. It'sa trend that has been observed the world
over, not just fork. Ohwow, that's us. So we for
us who for the ones who arenot there with something to watch up for
and be mentally prepared because yeah,there is a lot of funny in that
space because all of a sudden,no panic, SELVI, no panic.
(59:29):
We deal with issues that they areright. We enjoy our children on good
days when they don't have scisions andthey're happy. We have fun that day.
When there is a crisis, wedeal with it as it happens.
And some of these things are notreally in your hands. It's not because
there's something you failed to do asa parent. And when the babies or
(59:49):
the child is five years of age, we cannot do or give certain medications
to prevent decisions when they're older.So it is part in nature of the
illness. Maybe that's the easiest wayto look at it. So don't worry
about it. If it happens,we're such about it. We sort it
out. If it doesn't happen,then it's okay. We we deal and
(01:00:15):
move on and embrace the new thatis there. Okay, all right,
okay, thank you very much.It has been actually a very informative session.
I wish we could have you forlonger, and because I know there
are very many questions, maybe we'llhost you another time and maybe you'll be
able to also take us through thedetails of autism and development and not really
(01:00:40):
development, but like to just generallyunderstand the neuro diverse in itself. You
know, the way you took usthrough the pregnancy and how it affects the
brain and all that. So atleast we we've learned to embrace and understand
what epilepsy is all about. SoI would like to pass my see our
gratitude for taking your time. Andthey are very very busy person and at
(01:01:00):
least you've given us some hope andsome good views that I LEAs you're training
more pediatric neurology, so at leastyou would have to sit outside hospitals until
one am. I know we areforced to do that sometimes, you know,
and wait long hours, just forthe sake of having our children in
a good space. And for everyonewho joined us, we'd like to also
(01:01:22):
say thank you those who've joined ushere on Zoom and those who are watching
us from home through Science TV,thank you very much. We've had our
guest that was doctor Paulin Samia fromthe at the Family University Hospital talking to
us about epilepsy and seizure and afteringyour host Silvia moramochavel from a part of
(01:01:43):
Holy Speaks, And as always wesay, take care of your child,
take care of yourself. Make sureyou are okay so that your child will
be okay. They will be ableto sense it when you're overwhelmed. They
will be able to know something iswrong with mommy and it will give out
also now moment thousands stuff like that. So don't forget you as you're taking
care of yourself. Take a MeeTimebenefits once in the week so that you
(01:02:07):
are fit as a fiddle to beable to take care of your child.
So next week we shall be hostingWeedy. We will be discussing menstruation,
neurodiversity, how to handle it,how do you handle your child during the
period, how do you teach thisto them? So we will be resuming
our regular time for the NEUROI justshow at two pm next Saturday. And
(01:02:30):
after that we shall be hosting doctorSusan who will be talking to us about
development and neurodiversity. Why do ourchildren slag behind? What conses it?
How what interventions? How do werehabilitate them so that they're able to perform
at their peak. So we haveour fully packed on this for you and
we hope you'll be joining us everySat Saturday two pm for the same.
(01:02:52):
Thank you doctor Samya for making thetime and for joining us today once again,
and we shall see you all nextweek. And if you're not following
us on social media, please makesure you do so on Facebook. We
are on twitters and the speaks forand on Instagram Andti Speaks and Facebook.
We have our private group where wecan encourage and teach each other and share
(01:03:13):
our experiences as care givers. Thatis Anti Speaks for special Needs person in
brackets SMP on Facebook and for thosewho have joined us late, don't fret.
We will be uploading this episode onour YouTube channel. That is Anti
Speaks for Special Needs Persons. Followus so that you get that notification.
So thank you and have a goodnight and remember to enjoy it. Tomorrow.
(01:03:34):
It's for Sunday and we hope it'sgoing to be a sunny day.
Thank you doctor Colin for being withus day. Thank you very much for
inviting me. And have a goodevening as well. Thank you. Bye
bye, oh, thank you bye.
So doctor Samia, are you allYes, I am Sylvia, and I
don't know if you have everybody whoyou would have liked to attend. Yes,
we have, we have a number. We're good. I believe we're
live in the studio on Science TV. So yeah, we're good to go.
(00:23):
We are catering for a very broadwhat do we say, Our guests
are everywhere, so we currently havea very good number, so we're good
to go. We can still themoney. Okay, So today, I
think that we really should have,as you say, what we call sort
(00:45):
of like listening and sharing sessions.I wouldn't want it to be sort of
like a one sided sort of talk. So I think that I would give
a very brief presentation around the perimatalrisks for epilepsy, meaning what are some
(01:11):
of the things that go wrong ineither during pregnancy, delivery or soon after
delivery that may lead to epilepsy.So don't focus on the data. It's
just one of the background things thatwe can talk about. And I think
that the rest of the session couldbe open to discussion to things that either
(01:37):
said or things that may be relatedto your own experience. I think the
rest of the session should just beabout sharing things that we know and things
that you know can be a benefitto the group of parents who are present
today. So so there is thata good plan? Yes, that to
(02:00):
you? That is that's a good, perfect plan. Then we can be
able to at least engage the parents, the ones who have that we have
a few questions at Kley, andI'm sure there are others who will.
They are engaging and asking, sowe'll be able to handle all of them.
So, yeah, we're going togo, okay, fine, I
will share my screen. Oh there'sno screen sharing. It's okay. Then
(02:22):
no problem, absolutely no, no, no, it's perfectly okay, it's
perfectly fine. Okay, No.It actually makes it easier to move faster
because I hadn't wanted it to bea long talk anyway. Mm hmm.
(02:44):
So basically, I think one ofthe things we as I said earlier,
the thing, the section of epilepsythat I wanted to focus on today is
about pery natal risk factors and theyso in Kenya, we're lucky that we
have had so many studies already conductedto try and find out how frequent epilepsy
(03:10):
is, what are the causes,what is probably missing is more studies into
outcomes for children with epilepsy as wellas out studies into the treatments that we're
offering right now and what it isthat can be offered to make things better.
(03:30):
So already we know that in Kenyawe have the prevalence of epilepsy at
approximately for one in every one thousandchildren, which means that if half of
our population is under eighteen approximately,and we have about forty seven million Kenyons
(03:51):
at the moment, it just meansthat we have a significant number of them
that live with epilepsy. So that'sone for every one thousand children that is
born in our country and approximately elevenout of those forty one their epilepsy will
not be well controlled. Data thathad been provided to us from Killifi a
(04:16):
long time ago into the district andnot so long ago we look at twenty
ten approximately. It just showed thatperinatal events, that is, things that
may go wrong either close to delivery, soon after delivery, or during delivery,
they contribute to about five percent ofthe cases of epilepsy. So that
(04:40):
means that mothers who want to goprolonged labor, mothers who have say bleeding
in a late pregnancy, during delivery, before the baby is delivered, and
also i'd mentioned prolonged labor where thebaby probably comes out without breathing. Those
(05:02):
children are at risk for epilepsy.So the other factor that we know in
our country has contributed significantly to theoccurrence of epilepsy is the presence of what
we call nonedal sepsis or infections inthe new bond. So immediately a baby
(05:26):
is borne, we know that prolongedly, but it is not a good thing
because the baby then remains in thebath canal or close to the bath canal
for longer than is necessary. Duringthat time, they could inhale secretions from
the bath canal or contaminants from thebath monitoring process. As people or as
(05:51):
healthcare workers monitor that process, contaminationcan also happen and the name it then
or the new born baby and uhinhale those infected open terminated secretions end up
with an infection. And because theirbrain is one of the most mature parts
of a baby when they're born,then the brain is very vulnerable to infection
(06:16):
and infections around that time have alsobeen positively linked to epilepsy in our country,
So it's not that the ne neediusyou know, sigious that happened in
the newborn period about half of themas well as a result of infections at
that time, so depending upon whereyou live. The other factors that have
(06:43):
been identified include malaria. Malaria inthe mother during say the last trimester,
it changes the way the body functions, and then that may also get problems
like seizures in herself. She mayhave anemia while she's having malaria. She
(07:04):
may also contract other infections, includingbacterial infections. So malaria in pregnancy,
especially so the last trimester, canlead to preterm bath where a baby is
born before they're quite ready. Andwe've also talked about other complications in the
mother which may lead to epilepsy inthe child. For example, if she
(07:28):
has a seizure herself during a malarialinfection, that in itself interferes with blood
supply to the brain of the unbornbaby, and that baby then may develop
epilepsy in the final analysis, sosoon after delivery. Even if everything goes
well once again, there are certainfactors that can lead to epilepsy in a
(07:54):
small child or even in later life. Once again, infections are important.
They contribute to another maybe twenty percent. If a baby soon after delivery has
infections or before age one has problemslike meningities or what we call many going
caphalities, that is infection of thebrain itself class it's covering, or unfortunately
(08:16):
it gets conditions such as tuberculosis oreven say va malaria. All these have
also been known to lead to contributeto epilepsy. Of course, there are
other factors that are not related toinfection. For example, if a baby
(08:37):
is born with a brain that isnot formed properly, which is something we
discover during the course of investigation ortrying to find out why the baby has
epilepsy. Brain malformations are not verycommon, but they contribute to about five
to ten percent of another five toten percent of the causes for epilepsy or
(08:58):
can Then we also have inherited problemssuch as sickle cell disease, which is
quite common, say in the coastalareas Western Province or what you called Western
Province in Kenya, as well asa nyanza. We have certain groups in
(09:20):
our country to carry the genes forpsyco cell disease, and so if a
young child inherits two of these genesfrom both parents, they may end up
with a severe form of siicle celldisease, and as a result of that,
then they may end up with epilepsy. Then finally we have and one
(09:46):
of the reasons why people get epilepsyin relation to cico cell disease is because
cicle cell disease in itself can alsocause strokes. They can cause stroke.
It can cause stroke in a youngthat is, a stroke is basically an
interruption in the circulation of the brainor the brain, the blood circulation in
(10:07):
the brain for this young child.And then once the stroke has happened,
then part of the brain may notsurvive. And if those cells die and
it forms car tissue inside the brain, then that's cartersue is active and actually
causes epilepsy. Then the other commonproblem we have in our country is trauma,
(10:35):
basically traumatic health ahead injuries. We'vehad of stories where children are not
well treated at home for various reasons. They may undergo non accidental injury.
For instance, if a child isinvolved in a fight with an adult or
falls from a height, which isnow accidental injury. And some the commonest
(11:00):
forms of an accidental injuries involved borderaccidents. You've seen around children being carried
around, they have no helmets.They're involved in these accidents that in itself
can also lead to epilepsy in thefuture, even if the child comes out
of that episode without many other injuries. Road traffic accidents also important. We
(11:28):
have seen parents sitting in the frontseat or driving with children with them at
the wheel. This child is notbelted, so when an accident happens,
the child suffers even more than theadult because they're smaller and so they tend
to be thrown around quite a bit. We have received children who were collected
(11:52):
very far away from vehicle in whichthey were traveling, because if the windows
are open, then the children justfly out if they're not belted. So,
once again, another ten percent ofthe children who have epilepts in our
country it may be related to roadtraffic accidents. Then, finally, we
have another large group of approximately thirtypercent of children where despite our best effort,
(12:20):
we cannot always pinpoint a cause forthe epilepsy in this child. And
a lot of times that is becausethe child carries a genetic change which then
predisposes them to seizures. So thisgenetic change could be that it has happened
(12:43):
for the first time in that familyin that child. In some instances we
find that there are other family memberslike maybe cousins that is, maybe this
is the nephews to the parents whobring the child, brothers and sisters that
is, un as and aunties tothis individual child, and sometimes even grandparents.
(13:05):
So for genetics, it's possible thatthe MRI brain or any other form
of image you do may be normal. It is possible that other investigations such
as an EEG may show communication problems. So genetics genetics basically plays a very
(13:26):
important role in the you know,in the occurrence of epilepsy in children,
and sometimes it's very buffling for familieswhen they come to us and they ask,
what is the problem, Why doesmy child have this issue? The
tests were normal, So a lotof times you find that, yes,
(13:50):
this genetic aspect is the main contributorto that presentation. So in the world
currently it is possible to evaluate forgenetic problems. It's just that it's quite
expensive in our country because these testsare not done very frequently. When you
do access them, we're looking atabout one hundred and fifty thousand kind of
(14:13):
shillings for a genetics panel and thegenetics panel would also vary because initially we
only were able to evaluate like aboutone hundred genes which are frequently associated with
epilepsy, and these days we havepanels that evaluate up to four hundred genes.
(14:33):
So depending upon availability. The factthat even the genetic test comes NOLT
negative, it doesn't mean that thatis not the reason. So finally,
I also wanted to come out otherproblems that a child may have that may
contribute to epilepsy but occur outside thebrain. For example, we have observed
(14:56):
children and genital had this you've hadabout children are born with a hole in
the hat, a number of themwill develop epilepsy. And we think that
it is because when the brain isbeing formed, when you have an unusual
formation in the hat, that tooaffects how the brain is oxygenated or changes
(15:24):
blood supply to the brain. Itcould be episodic, it could not.
It may not have the right oxygenconcentration. The many reasons why that can
happen. So also body malformations outsidethe brain have also been associated with epilepsy.
This is a small number, butit's an important thing to know because
sometimes families of children, like thosethey sit on wonder why is it that
(15:48):
this child has more than one problem. Then finally, we hadn't also talked
about some other conditions in pregnancy thathave been found not just in our country
but also in other places to contributeto a small percentage of children with epilepsy.
I'm talking about mothers who have diabetes, the lytas or soca as some
(16:12):
people would call it, especially sowhen it is poorly controlled, and even
then that is they keep having veryhigh sugars or very low sugars. Such
children born of moms with such problemsthey can end up with epilepsy. And
then finally, also high blood pressureand pregnancy is also one of those factors.
(16:37):
So I think I was stopped there. And as I'd say, they
did not want it to make ita long talk or a very technical talk.
I just wanted to give you someideas about the things we already know
in our country contribute to epilepsy.Thank you, thank you very much.
That so, yeah, I alsohave learned. I thought I have bread
(17:00):
vastly, but at least I'm learningevery day, and it's something that many
of us experients actually wonder what happened, what went from But I'd like for
us to touch a bit on thedifference between a convulsive disorder and epilepsy and
(17:22):
also the different types. Because thereare moments you hear parents saying my child
is twitching, my child is behavingfunny and zoning off. Could you just
like guide and try and put painta picture for those who maybe might not
be conversant with what we were talkingabout, like what happens in the body
during that time, so that atleast we can enlighten maybe that those who
(17:44):
do not know actually that the childis going through a seizure and yet it
is happening. Okay, The correcttime to use is actually epilepsing once somebody
has had at least two events morethan twenty four hours apart as a result
of abnormal brain functioning, and theyend up with some of the science or
(18:12):
symptoms that you point out, wherea child is no longer himself. He
may look confused, he may haveeye flattering, he may have staring,
he may be but the hallmark ismostly unresponsiveness or altered responsibleness. We have
very many types of seizures. Themost important thing is to be sure that
(18:37):
there's nothing else causing this presentation.So that is why evaluation or investigation is
important, because once we know thatthe only factor contributbuting to this presentation is
abnormal brain function, then we arevery comfortable toblit epilepsies. Somebody can do
(19:00):
use a responsiveness for many reasons.For example, if you're having an abnormal
heart function or an abnormal hat rhythm, put get an episode of fainting,
which we cause this things. Andsometimes people use convulsive disorder loosely, you
(19:22):
know, to me and a situationwhereas somebody has lost consciousness or somebody has
had an episode of altered consciousness.So convulsive disorder and sometimes even seizure disorder
is basically just a loose term.But epilepsy is specific and it encompasses very
many seizure times. Some children willfall in what most people would understand.
(19:48):
You have had to be you knowwhere you fall, you shake both sides,
you have saliva coming out of yourmind. A few people may even
have in continents, but in childrenit's not always like that, even for
adults. But because we are childrenspecialists, wells confine ourselves to children.
(20:11):
Children may have nothing else but justtearing and flattering, and they continue with
just an interruption in their regular activity. You see that the child is not
with you and then snaps out ofit and goes on. So we have
that kind of seizure type. Thechild may say I feel funny, I
(20:32):
hear things, there's something with mystomach, and maybe then they keep quiet,
they make sure how look like they'rechewing something. You cannot make them
respond at that time. It usuallywill last about a minute or less,
and then the child continues. Onceyou see something like that, sometimes even
as a parent, you wonder whatdid I just see? Did it actually
(20:53):
happen? So there are many seizuretypes, so to say, there's some
who just get shaking and acting ononly one side, and yet they're fully
alerted. They can even tell youwhat they're feeling, what is happening.
They're trying to hold that hand,they're looking very scared. They can still
talk to you, but they arestill having a seizure. So children will
(21:15):
have different seizure types. But onceyou can definitively report that it happens the
same way we've had at least twotimes it wasn't cost by anything, then
most likely that is epilepsy, andthat is the correct term. So we
for us who are trying to consoleourselves saying my child only has a convulsive,
(21:38):
we've better embrace it, because everylepxic makes it very heavy, It
makes it personally, it just makesit this every thing, especially for us
whose kids have now the convulsion asa core MOVID like when you have autism,
then you have convulsions, or youhave syllable palsy or go on syndrome,
and then now you have also decisionson top of that. So where
(22:00):
we add this other heavy word onit, it just feels like dear erld
doing to do there so safe thatway and ensure that we have what you
call this that as a safe worldfor lack of a better world. And
then the other thing about the effectsof when now the children have prolonged seisions,
(22:26):
At what point as a parent shouldlike panic Apart from when you say
it like involuntarily, if it comesmore than once or twice in a specific
period of time, at what pointshould we panic? Because you have moments
where we have the short episodes,We have the moments of whether the child
stays in a days and it's blank. Then on top of that we find
(22:47):
the time where you have a sitterfor a long time and after which the
child either passes two or peace.And most of the time you're told that
is like a danger sign. Whywould you want? What is that all
about? Like what happens to thebody of the baby? I have points
that its results to the kindly justenlightness of that. Okay, first and
(23:11):
foremost, as the kere giver ofa child, you're you're advised not to
ever panic. Panic is not agood word. It's not a good situation
to begin. And the reason whyI say that is because your child is
actually dependent on your own stability fortheir safety because they themselves in that situation,
(23:32):
they cannot protect themselves. So Iguess the correct way to or rather
what you're asking is when do Ineed to take action? So basically,
once a seizure has started, thereare only two other things that can happen.
That one, it will terminate byitself without any medication. And if
(23:53):
it's going to terminate it by itself, usually that happens within the first three
to five minutes. So if you'rehaving seizures that are happening two or three
times in a day, you reallydo need to go to hospital, right
because once a child has had morethan one seisure in a day, that
(24:15):
is, you had one, forexample, at eight am, you've had
another one, not about nine o'clock. You're now looking at a third one
at ten o'clock. It is verylikely that these seizures will continue unless something
else is given. So the othersituation is where a child continues with having
seizures for longer than five minutes.Five minutes is universally or globally accepted as
(24:44):
the outer limit by which a healthcareworker really must intervene. Any seisure that
goes beyond five minutes, it's likelyto go on for much longer, so
seizures which are less than lasting lessthan five minutes. Usually there isn't much
injury to the brain that happens.But the longer a seizure goes on,
(25:07):
the higher the likelihood that it willcause permanent changes to some of the nerves
or some of the neurons as wecall them in the brain, or that
other changes that are detrimental to thechild may happen. For example, as
they're choking and coughing, sometimes thesecretions will go the wrong way. Understand,
(25:29):
and so in decision that goes onbeyond five minutes, you need to
be concerned and be making your wayto a place near you where they can
assist and decision. It usually doesn'tIt doesn't have to be your regular hospital,
because your regular hospital could be veryfar away. But we get concerned
about seizures that last longer than fiveminutes. So regarding the initial interventions when
(25:55):
a child has had a convulsion ora sisure, so to speak, it's
to lay them on the left side, allow whatever's in the mouth come out.
Do not put anything into the mouth, don't try to feed them,
don't put in a stick, don'tput in a spoon to try and protect
them from biting. The time,the tangue is very mobile. It's really
(26:17):
bitten and even if they right intendsto have to heal like you could actually
cause more injury to this child byputting something in the mouth. So don't
put anything in the mouth. Makesure there's nothing around them that can injure
them. Make sure that their faceis they're not facing down into a soft
(26:38):
pillow, put them on a farmsurface, let them lie on their left
side, lose them any tight clothing, and if you're in public, just
ask people to give him or herspace. Then after that, move the
child as soon as you can toa safe place, and if the seizure
is clearly ongoing beyond five minutes,you really should be making way to the
(27:00):
hospital. And as I mentioned earlier, also children who have multi proceidures in
a day, whether they're in treatmentor not, I think those are children
who ideally should also be attended to, so now then later, also depending
upon how well the mother or theparent understands the child. Very long answer,
rights, it's long, worthwhile,precise and exactly what we need to
(27:23):
hear. Because when in school,when you're looking at the first age that
they've given, they always say,when someone gets a kind of electic attack,
put them on the side to theschool in the mouth. So long
in school, that's what they're taught. So that that means we need to
have our education as part corrected inthat. And yes, I can see
(27:44):
we have someone's Patricia has Patricia hasa question. Patricia, Yes, please
come more than ask. Okay,thank you so much, saving doctarry.
I just wanted to inquire idea inhere that caritation on infantaise pass zooms.
I was to just know the differencebetween I s and the epilepsy or is
(28:11):
it is epilepsy or is it aseizure? Where do we put it?
Okay, okay, thank you Patriciafor that question. Today, the brief
discussion we had was just about causation. What is it that causes epilepsy?
What do we know already about that? So today we did not discuss what
(28:32):
we call epilepsy rooms And what you'reasking about is an epilepsy syndrome infantaus pasms.
It's basically an epilepsy syndrome, meaningit is a group of characteristics that
tend to occur in certain children consistently. So, yes, it's a form
(28:56):
of epilepsy. And this will betrue children who are usually six months and
below. A lot of times youwill find there was a problem either before
birth or during birth. For thevast majority, when we do the imaging
or the pictures of the brain,very frequently we will find a problem,
(29:18):
meaning either the brain doing form properlyor there was injury for whatever reason.
And then the seizures tend to becharacteristic. They tend to have this forward
sort of bending bringing their hands upand the legs, and then they do
that in clusters. The baby lookslike they're in pain because they cry after
(29:40):
that, and it can happen manytimes in the day. Then if the
baby had already started smiling, cooing, looking at mom, holding the neck,
or even sitting, you'll notice thatmost of them regress. Then when
you do the EEG a lot oftimes you will find a specific pattern,
very disorganized, that causes worry evenfor the clinician. So that's what defines
(30:07):
a fine tiles puzzlet. It isa specific form of epilepsy. Okay,
okay, I know being in thegroups with a lot of the care givers,
I see a lot of that spasticand all that. So those are
types of epilepsy or are they justtypes of how it presents itself? Like
(30:30):
how do we clarify that? What'sthe difference of the sperasans and now the
full body convulsions. Because there isa parent who is saying like one side
of the child is the one thatjust reacts like the jacks are one side,
and they talk about the eyes twitchingconstantly. And also like for my
child, I notice sometimes when he'sasleep he just does like jacks like his
(30:56):
I'm trying to find the right wordto explain it's like he got startled.
He's asleep. So of course forus as mothers are like, oh my
god, what's going on? Youknow, especially when you have a history
of convulsions and he's made when thereis things like February convultions. Just take
us through about these different types sothat we are able to maybe support other
(31:17):
parents that we know may not beaware, because we also found out that
their parents and caregivers who are notaware that actually that is epilepsy presenting itself.
How do we identify the Okay,I think really, I think I'll
(31:38):
go with the first question you askedabout the difference between fantise posms and spasms.
So, as I said earlier,infantius posms are quite specific. The
child presents like somebody in pain.They will probably bring their head down,
their hands up, their legs areand this can happen several times within a
(32:00):
few minutes, and then it stops, and then the child starts all over
again. It's a quite a scarything to watch. It causes concern because
this moum fails like her baby ishaving tammy eggs. And if they are
observant, they will also notice thechanges in their baby once that starts,
(32:20):
and that is why it's a veryimportant form of epilepsy. Forums as healthcare
workers, it is important because childrenlose milestones, children move backwards, children
lose abilities, and unfortunately it's associatedwith the permanent changes in the brain.
(32:42):
Even if the baby is treated,it's possible to stop those kinds of scisures
using very specific medications which are noteven used for other forms of epilepsy.
And unfortunately, those are babies whoeven if the scisures stop, they tend
to be behind their appears because whateveris causing an infantile spasm is usually a
(33:06):
serious problem. So that is oneanswer then for spasms. Spasms are things
that we see in children with cerebralpalsy. For example, if you bang
a door and don normal circumstances,you know you will wonder what it is
that has happened. But because theregulation of the muscle activity in a child
(33:30):
who is already known to have cerebralpalsy is not well regulated, so you
may find that they actually are notjust startled wondering what's happening in the environment.
They may also have certain sudden movements. But how we differentiate spasms from
seizures is that one a spasm alwaysis caused by something. I've talked about,
(33:51):
a sudden noise, moving the babyand dressing the baby, changing the
baby's position something. It is somethingyou have done that causes the spuzzm.
And one of the ways a parentcan differentiate that from a seizure is that
spusms, once you hold the babyor you hold that hand that is all
(34:12):
that arm that is having the unusualmovement, it usually stops and usually stops
completely. But seizures you cannot stopthem. As I mentioned earlier, it
does not stop. It just continuesuntil such a time when either the seizure
itself dissipates or the baby is givenmedications. So usually that's how to differentiate
as puzzle from as seizure. Aspuzzle is caused by something, you can
(34:37):
actually make the child have a spuzsmivenin clinic, because you just have to
do something some thing and then apparentfor that. For spusms, we generally
don't have treatment. Occupational therapy helpsreduce those puzzles, especially so as the
muscle becomes less tight for babies whoare also on muscle relaxant medications. They
(34:59):
also tend to have. That helps, Yes, that that really helps.
At least there is guys. Therethere is another question in one of the
caregivers book where the mother has askedwhen the jacks start in the leg and
then progressively go to the upper livingshe's concerned and wondering does the child have
(35:21):
pain during a convulsion? This issomething that we're aware. Are they in
pain or what's caused the crime?After the blacking out? And you know,
because I know, like for myown child, he will black out
and sleep for like an hour afterthat. What was the exhaustion? Is
it? Exhaustion? Is it?And then all the crime? What?
What? After? You get mypoint on that one? So this one
(35:46):
one is it painful? And twobecause of course we see for us we
see this the child crying, soof course there is a discomfort. So
is the jacking painful? What exactlyis going on? And the what do
you call this? The reactions areafter where they sleep or they become mobile
(36:06):
for a very long time. Whatactually just goes on to make it that
way? Okay, So the basicproblem when children have epilepsy is that the
neurons are not well coordinated so tospeak. Right now, we're holding this
conversation because the brain selectively allows themuscles that produce sound to work, whereas
(36:34):
the muscles that allow you to walkare sort of not muted, but they're
not activated at this time. Sowhen somebody has a seizure, that sort
of coordinated way in which things existis completely disrupted. It's like the way
we're holding a good conversation here,we take tinds, we try and understand
each other. During an epilepsy,it's like all the neurons are firing at
(36:59):
the same time in a chaotic anddisorganized fashion, and therefore their presentation of
what you see is many unusual thingslike the staring, the shaking when you
actually shouldn't be shaking, their inabilityto respond, or even children who say
very odd things during seizures and thenthey're confused, and sometimes because of the
(37:25):
abnormal brain activity, they will cry. Crying could be as a result of
fear that they feel because some partof them is still aware that something is
happening. It's also scary. It'smostly a scary event, but the crying
is usually not because of pain.They're not in pain. It's just that
(37:47):
whatever is going on in their brainsat that time is basically abnormal. They're
not supposed to be crying. Forexample, the children who cry in their
sleep. The cream right, it'sas a result of abnormal brain activity.
It's not that the child is inpain somewhere. And once this abnormal brain
firing dies down, then the brainis exhausted, then they go That is
(38:10):
why they go into a deep sleep. At that in point in time,
they're not capable of doing anything elseapart from maintaining the vital activities such as
briefing. You know, the heartis beating, They can't really do anything
else. So it's a sort ofit's because of exhaustion of the neurons.
(38:31):
So they go into sort of likearresting state, and therefore you're not able
to wake up your child, andyour child at that time is not able
to do it. So they're notin pain. It's the crime is as
a result of abnormal brain function happeningduring the session. Wow, this is
(38:51):
a masterclass well trying to break itdown, but that's what it is.
And I think that is exactly whywe do this, and that's why we
call it neuro digest, because wewant to digest everything of what is going
on and break it down. AndI appreciate all the knowledge that you're sharing
because now, at least because sometimeswe end up breaking down imagining that our
(39:15):
children areying so much pain there isnothing I can do for my baby.
It renders you to feel like you'reuseless at that point, and as a
parent. So we have Mina whosays she gets decisions herself, and she's
wondering about epilepsy and asthma I requestedfor her or she has both conditions,
(39:37):
so she's wondering if asthma in itselfleads to epilepsy. And she also says
that when decisions come, it createsa lot of fear. So I think
it's an aura for her. Ithink it's an aura. Right. You
can expound on aura and all ofa sudden things. But Thanklena, that's
(39:59):
a very helpful question. Those aretwo independent conditions. There are very many
people who have asthma and they donot have epilepsy, And there are many
people with epilepsy and they do nothave asthma. So you will find yourself
needing to see like two different doctorsto help you. So of course there
(40:21):
are people who are quite convers likephysicians and nutritions quite conversive with both conditions,
and so they may be able toguide you. One does not lead
to the other. There are twodifferent systems. One is the the what
do you call the respiratory system orbasically the chest, and the other one
(40:43):
is the nervous system. So thoseare two different systems. Those are two
different conditions, and if both ofthem are needing active management, you know,
it just calls on you to actuallyactively manage both. Luckily, for
some people, asthma can be seasonal, like during this time when it's a
(41:05):
bit colder. You can see theway I'm dressed. It's a bit cold,
they may have more asthma episodes,whereas epilepsy is very unpredictable for majority
of the people, decisions can happenat any time. So, Nina,
thank you, that was a nicequestion. All right, thank you the
terry. So we have a questionfrom a parent who's saying that the daughter
(41:30):
is yes, yes, I havea question. Yes, yes, m
h to askty mm hmmm. Arethe particular types of food that tees us
(41:51):
actually not really, no, wedo not have uniform types of food that
cause seizures. However, alcohol inour adolescents and adults makes it much easier
for them to have a seizure otherthan you know, undernomalus circumstances, it
(42:13):
makes it Alcohol is one of thosethings that makes it more likely for you
to have a seizure than not.Having said that, we know there are
certain foods which if you take inlarge quantities, you're less likely to have
seizures. Just removing touches from thediets of many children with the poorly controlled
(42:35):
epilepsy that means epilepsy that is notresponding well to medication, that in itself
has helped reduce the number of seizuresfor most children. So it means that
they'll be taking more of animal protein, maybe foods with oils like coconuts and
other nuts, maybe more of eggs. So that to the contrary, there
(42:59):
are foods we know, including thingslike avocado fish, especially that if you
take them in large quantities and reducethe statues, you're less likely to have
seizures for your individual child. I'vehad a a mom who says, anytime
a child takes cold food, hegets a seisure. Our postulation on what
(43:22):
we think is that maybe when thischild is exposed to cold, they may
have a reaction in their body,or they may be a bit more sensitive
to cold weather cold foods, andso the way the body reacts to that
change, they end up with acision. So we don't think it's the food
itself, but what she tells usmakes us think it's more about the temperature
(43:45):
of the food and how the bodyreacts to it. So we're not aware
of foods that cause seizures. Okay, thank you, but I've learned something
that some can be treated. Yes, yes, yes, it's not but
a trigger, so there is adifference. It's not causing it, but
it can trigger it. To startthe episode, Yes, somebody, sorry,
(44:15):
I might have got you confused.My name is Nina and I started
the Purple Bench initiative. It's annice to meet you too, So,
doctor Pauline, my my question wasabout epilepsy and seizures. Was that when
I was much younger, much ofthe time I was found lacking oxygen,
(44:37):
whether it wasn't in in nursery school, out turned blue and then you know,
shortly after is when my seizures actuallystarted. So when that happened and
I was checked and found out thatI had epilepsy. Then we're kind of
correlated, is to you know thatthe asthma, because the asthma was bad
(45:00):
at that point, and I thoughtthat maybe it could have been one of
the things that actually caused the epilepsy. O. Great, thank you for
the explanation. Correct, Thank youall right, Now, I just want
to take the discussion to now managementor decisions. Now, we always get
(45:21):
medication to try and manage decisions andthe whole epilepsy so that at least the
children can be stable. But youfind there moments in time when you're given
aid the multiple medications, and thenwe find at times people say that kids
react to some of the medication,that new behaviors come through. And we
(45:45):
also have a question also where there'sa parent who's saying that the daughter has
sippy and she keeps making loud sounds. She's wondering is there anything that she
can do to stop the noise?Because the child is a radio medication and
she's on three sets different sets ofmedications, so she's wondering, like,
Okay, what exactly is that home? Okay, Yes, I can see
(46:10):
the question from Catherine to everyone.It's a good question. It's something we
have seen. Basically, what thismeans is that decisions haven't responded fully to
the medications that these babies are well. As care providers, we generally try
(46:32):
not to ever stop until such atime when we find a combination of medications
that is suitable for the individual child. The management of epilepsy is what I
tell my residents is not a onesize fits all. We have children who
are very lucky in the sense thatactually eighty percent of the kids we see
(46:54):
will respond. We will respond appropriatelyto the first medication that we choose and
all the scisions go. We mayneed to make adjustments along the way that
they don't need any other medications.Then we have another group of patients where
even three or four medications do notcompletely stop decisions. That's not very common.
(47:21):
But what we would tell Catherine isthat somebody needs to review the medications
her child is on and try tosee if there is something else that has
not been tried apart from what shehas stated on the group right, because
now, over time we have discoveredor we have access to other medications,
(47:45):
I can name maybe four or fiveothers which are not on that list that
can be tried for her child.And if they're found suitable and to give
her better quality of sleep, stopthe screaming would be good. So yes,
I've had a child like that whoit was uncomfortable for the family because
(48:07):
the neighbors would hear the sounds atnight and come and ask what is wrong
with the child? Why is shescreaming? So it took us a couple
of months to change over one ofthe medications. Actually what we drop to
the film and we actually give ababy to the babbitt and that she's perfectly
final. So there are many otherswhich would have to be tried for this
(48:30):
specific child. What works in onechild is not necessarily going to work in
another. So some children react verybadly to rivertril. There are others who
cannot do without the river trail,so treatment has to be individualized. And
I think Catherine needs to find somebodywho probably can evaluate the medications and see
(48:52):
what else can be added or changedor removed so that the quality of life
for her child and the family isokay. Thank you Doctcharry for stepping in
for contry. The other question thatmost of us are always hopeful that at
some point their convulsions will stop andthe sad reality on the ground with the
(49:13):
current situation we're having, we're havinglack of access of medication. But we
find we are consulting amongst ourselves ascaregivers, amusing this is equal to this,
which I know is not a goodpractice that we should We shouldn't be
doing that in terms of what whatyour child is using would not suitably work
for my child. But when itcomes to the combinations and how long one
(49:38):
takes, I know it varies fromchild to child, but in your experience
in the many years, how longand what percentage do we say of children
actually eventually stop relying on medication tocontrol the convulsions. Okay, it may
vary also from location to location andthe reason for the scisions, but where
(50:01):
I work, about eighty percent ofthe children are easily controlled with one medication.
But you'll also find the term it'schildren who tend to have genetic causes
for their seizures. You know,the MRI brain will be normal, but
the you know, there are manychildren who within too. You know,
(50:24):
within two years the decisions have stoppedand medications can be de escalated for about
eighty percent of them. But wehave another group of twenty to thirty percent
who it doesn't matter what you do. You most likely end up with reducing
the number of seizures, but youfind that maybe occasionally in the morning,
(50:45):
the child will still get one,and therefore it becomes a discussion between the
practitioner and the family about what isin the best interests of the child.
To be honest, you can actuallystop all sisions in any child. You
can give so much medication or enoughmedication said that that child is not capable
(51:07):
of having decisions. Now. They'redownside to that in some situations is that
yes, you've stopped decisures, butyou're now not having a functional child.
The child is either too drowsy orthe behavior is not appropriate, and especially
so the drowsiness bit. We havereally potent medications that can stop all siges.
(51:29):
So once in a while we willsit and discuss with the family that
it is better that we give thisamount of medication. We know it will
not stop all the scisures, butat least your child will be happy,
able to interact with you, ableto play, interact to the other children
in the house, not be drowsyand drooling all the time. But they
(51:52):
will still have that occasional seizure inthe world rather than I give enough medication,
you're not seeing any sisures. Buton the other hand, the child
is not you know, is notreally with you. It's not functioning appropriately.
So it's a compromise. But beforewe get to that compromise, we
will have tried appropriately in proper dosesdifferent medications. So for parents to be,
(52:22):
you know, trying different medications withoutguidance for their individual child, it's
probably not a very good idea.I know that we're not very many practitioners
in the country, but that isset to evolve because we have now started
training our own pediatric neurologists. Soit is possible that in a few years
(52:45):
to come that whatever it is youlive in the country, there will be
somebody easily accessible to you. Butin the meantime, please find somebody who
understands these medications and who can helpyou, even though it is during the
COVID time. Why I say thatis because during this time we've noticed that
(53:09):
a few children have gotten COVID,but the vast majority we have not even
admitted them. They have been managedat home because their illness is mild,
and the people who are getting severedisease are the adults. So please don't
fear to go to hospital, especiallyso for a child with suffering. I
(53:29):
do not know any hospitals now whohave closed their pediatric clinics. So the
advice to families is to take reasonableprecaution. Do not put masks on children
who cannot speak for themselves and tellyou that they're uncomfortable. Do not put
masks and children who are less thantwo years of age. You should wear
(53:52):
your masks, carry your sanitizer,Stay away from people who are coughing,
Try not to be in confined places. Is make your visits to hospital shot,
but please take your children for care. Wow, thank you. At
least we've touched on the cop becauseI know a lot of us would like
to do. That's a question weare struggling with. Do I go to
(54:14):
hospital? Am I at increasing therisk of now COVID? On top of
that, I know we've lost Welost the child the other day because of
convulsions in the middle of the nightand the effects of the cafew not knowing
what to do. I know we'renot supposed to panic, but naturally in
this case, you will panic withoutknowing what to do, also considering in
the financial duplications of COVID nineteen,so it's putting us can give us in
(54:37):
a very tight situation. I wantto go for that review, but can
I afford it because we have peoplewho are not even able to afford the
medication looking at the moment the wayLiberti is not available, but guys are
getting different prescription and it ends upbeing so expensive because it was affordable.
And now you're looking at the newprescription in something way beyond your budget.
(55:00):
So that those are some of thethings that are limiting factors cratified that now
can give us are being told ofhow to take this conversation forward, so
we have someone else asking, Shesays, thank you of Samia. The
discussion is very informative. Which isthe least acceptable number of conversions that a
child can get daily despite being puton medication like for drugs, Wow,
(55:23):
for drugs and the conversions are stillthere. Okay, I do not know
the name of the person because itsays techno sex here tale we will answer
the question. Our target when westart saying children is actually to have zero
four medications are rare in our clinic. Some years back before we had more
(55:50):
effective medications. Yes, a fewpeople used to be a four, but
we really try to use the twomost effective medications for an individual child.
So our goal is usually to havezero. So if you're not achieving that
on the four medications, then maybewe need to somebody needs to look at
(56:12):
the doses. Are all the dosesright? Are all the medications actually making
a difference for your child? Isthere anything else we can offer you,
like a dietary therapy or maybe ashort term steroid or a different kind of
medication. I think that if achild is having very many seizures well on
(56:34):
form medications, I think we needto rethink the whole situation. Is there
any surgery that can help. Sometimesyou're told no, sometimes you're told yes.
So I think that something else,you know, something needs to be
changed there, especially if the decisionsare very many and you feel that the
(56:57):
child's development is not okay. Italso depends upon the underlying problem for medications
of say around the higher side.I think there needs to be an evaluation
somewhere. Okay, So I hopethe parents has picked up from that.
Now. The other thing I havenoted is there any relation with especially for
(57:17):
the autistic children and triggers of convulsions, because you will find or a noted
do the reason past that once theyget to teenage, a child who has
not had a convulsive order before startsgetting it. Is there any relation as
to why this is happening, Yes, Sylvia. Medicine is very interesting.
(57:38):
I find it very interesting in thesense that when you're told that a certain
disease presents and progresses in a certainway, usually that's what happens. So
for our children with autism spectrum disorder, you'll find that when they're younger than
(57:59):
five years of age, only abouta third of them have epilepsy. But
once they hit teen age that flipsto about seventy five percent, fifty to
seventy five percent. Actually, letme not say seventy five percent. It's
actually a range of fifty to seventyfive percent. But yeah, but that
(58:22):
is what happens. You find thatwhen they're younger only a small proportion of
them have epilepsy, and as theygrow all that now children who will give
us to have epilepsy now have thedual diagnosis. It is not to be
because of ongoing maturational processes in thebrain and that is why that that observation
(58:43):
is made. As children with epilepsycontinue to grow, there are changes that
happen in the brain, just likeeverybody else. I mean, if you
sit and think about it as aparent, how you used to think when
you were sixteen years of age andhow you think when you're twenty six is
very different. What's changed is justmutual processes in your brain. So as
a result of that, and sometimeschanges within the neurons themselves, then they're
(59:07):
more likely to have epilepsy. It'sa trend that has been observed the world
over, not just fork. Ohwow, that's us. So we for
us who for the ones who arenot there with something to watch up for
and be mentally prepared because yeah,there is a lot of funny in that
space because all of a sudden,no panic, SELVI, no panic.
(59:29):
We deal with issues that they areright. We enjoy our children on good
days when they don't have scisions andthey're happy. We have fun that day.
When there is a crisis, wedeal with it as it happens.
And some of these things are notreally in your hands. It's not because
there's something you failed to do asa parent. And when the babies or
(59:49):
the child is five years of age, we cannot do or give certain medications
to prevent decisions when they're older.So it is part in nature of the
illness. Maybe that's the easiest wayto look at it. So don't worry
about it. If it happens,we're such about it. We sort it
out. If it doesn't happen,then it's okay. We we deal and
(01:00:15):
move on and embrace the new thatis there. Okay, all right,
okay, thank you very much.It has been actually a very informative session.
I wish we could have you forlonger, and because I know there
are very many questions, maybe we'llhost you another time and maybe you'll be
able to also take us through thedetails of autism and development and not really
(01:00:40):
development, but like to just generallyunderstand the neuro diverse in itself. You
know, the way you took usthrough the pregnancy and how it affects the
brain and all that. So atleast we we've learned to embrace and understand
what epilepsy is all about. SoI would like to pass my see our
gratitude for taking your time. Andthey are very very busy person and at
(01:01:00):
least you've given us some hope andsome good views that I LEAs you're training
more pediatric neurology, so at leastyou would have to sit outside hospitals until
one am. I know we areforced to do that sometimes, you know,
and wait long hours, just forthe sake of having our children in
a good space. And for everyonewho joined us, we'd like to also
(01:01:22):
say thank you those who've joined ushere on Zoom and those who are watching
us from home through Science TV,thank you very much. We've had our
guest that was doctor Paulin Samia fromthe at the Family University Hospital talking to
us about epilepsy and seizure and afteringyour host Silvia moramochavel from a part of
(01:01:43):
Holy Speaks, And as always wesay, take care of your child,
take care of yourself. Make sureyou are okay so that your child will
be okay. They will be ableto sense it when you're overwhelmed. They
will be able to know something iswrong with mommy and it will give out
also now moment thousands stuff like that. So don't forget you as you're taking
care of yourself. Take a MeeTimebenefits once in the week so that you
(01:02:07):
are fit as a fiddle to beable to take care of your child.
So next week we shall be hostingWeedy. We will be discussing menstruation,
neurodiversity, how to handle it,how do you handle your child during the
period, how do you teach thisto them? So we will be resuming
our regular time for the NEUROI justshow at two pm next Saturday. And
(01:02:30):
after that we shall be hosting doctorSusan who will be talking to us about
development and neurodiversity. Why do ourchildren slag behind? What conses it?
How what interventions? How do werehabilitate them so that they're able to perform
at their peak. So we haveour fully packed on this for you and
we hope you'll be joining us everySat Saturday two pm for the same.
(01:02:52):
Thank you doctor Samya for making thetime and for joining us today once again,
and we shall see you all nextweek. And if you're not following
us on social media, please makesure you do so on Facebook. We
are on twitters and the speaks forand on Instagram Andti Speaks and Facebook.
We have our private group where wecan encourage and teach each other and share
(01:03:13):
our experiences as care givers. Thatis Anti Speaks for special Needs person in
brackets SMP on Facebook and for thosewho have joined us late, don't fret.
We will be uploading this episode onour YouTube channel. That is Anti
Speaks for Special Needs Persons. Followus so that you get that notification.
So thank you and have a goodnight and remember to enjoy it. Tomorrow.
(01:03:34):
It's for Sunday and we hope it'sgoing to be a sunny day.
Thank you doctor Colin for being withus day. Thank you very much for
inviting me. And have a goodevening as well. Thank you. Bye
bye, oh, thank you bye.
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