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September 1, 2023 21 mins

On this episode, we continue our interview with the director of the pediatric stroke program with McGovern Medical School at UTHealth Houston as we go over questions parents submitted for our medical professional. Today’s episode continues the discussion, diving a bit into epilepsy, EEG’s and stroke in infants.  Each episode for this season ends with a focus on a special children’s book with a "Things to Think About” takeaway lesson. The focus of this month's "Things to Think About" is based on the Children's Book “The Boy, The Mole the Fox and the Horse” a fabulous book of wisdom written by Charlie Mackesy.

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Episode Transcript

Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Raylene Lewis (00:02):
Hi there, and thank you for joining us on AVM
Alliance, a pediatric podcastfor families and friends whose
lives have been affected bytraumatic brain injury, rare
disease, brain disorders, orstroke.
The purpose of this podcast isto focus on the kids' side of
brain injury.
With honest talk news,information, and discussion for

(00:22):
our community, being a parent ofa medically complex child is an
extremely difficult path tosuddenly find yourself on.
I'm Raylene Lewis and my sonKyler suffered a hemorrhagic
stroke at age 15.
Thank you for joining us.
First thing, I wanna leteveryone know that AVM Alliance,
an official 5 0 1 C threecharity organization now has its

(00:46):
own website,www.avmalliance.org.
On it, you will find lots ofinformation as well as personal
stories.
We are also super excited toannounce that you can now find
the link to One Mind-Full Mamaunder our for Parents Helpful
Organizations section, and ifyou haven't seen her content

(01:09):
yet, we highly recommend thatyou check her out.
Additionally, we are workinghard to provide information that
people want to know more about.
So if you see something missingfrom the website or have any
questions for us, we do nowoffer a live chat button at the
bottom right of the website.
Don't hesitate to reach out.
We are continuing today withpart two of our, The Doctor Is

(01:32):
In series going over questions.
Parents submitted to thispodcast for our medical
professional last month's PartOne episode focused on medical
terms parents read on radiologyreports and went into more
detail about the differentradiology tests doctor's order.
Today's episode continues thediscussion, diving a bit into

(01:53):
epilepsy, EEGs, and stroke ininfants.
And next month we will end theseries with questions about stem
cells and other therapies andprograms for kids who have
suffered a stroke.
As a reminder, each episode forthis season will end with a
focus on a special children'sbook with a things to think
about, take away lesson.

(02:15):
I am so excited to have thedirector of the Pediatric stroke
Program with the McGovernMedical School at UT Health
Houston.
Dr.
Frazier, thank you for joiningus.

Dr. Stuart Fraser (02:26):
I really appreciate the invite.

Raylene Lewis (02:27):
All right.
Before we move on, just a couplereally quick things.
Okay.
So you can tell us what they arewhen parents read this on a
report.
Cerebral p a.
R e n c h y m a.
Okay.
I dunno how to say

Dr. Stuart Fraser (02:39):
that's your brain.
Parenchyma is the brain.
So your brain tissue, the, thestuff that looks like sponges,
that's parenchyma the brain.
Okay?
That's another why we use somany words for the same thing.
I don't know, but yes, that,that's just brain tissue.

Raylene Lewis (02:54):
Brain tissue, okay.
Mass effect.

Dr. Stuart Fraser (02:57):
Mass effects the effects of mass on
something.
So usually when I use that term,someone has a tumor or a bleed
that is pushing on other partsof the brain.
The brain has a very setposition it likes to be in.
When it is being pushed, weoften call that mass effect and,

(03:18):
and that can be a bad thing.

Raylene Lewis (03:21):
Okay.
basilar cisterns?

Dr. Stuart Fraser (03:24):
That is the sort of base of the drainage
system of the brain.
We often look at it, I'm, Iwould guess on that report,
someone said the basal orcisterns are open.
That's usually a sign that themass effect is not immediately
an emergency.
There's still space at the baseof the brain.
We, we like to talk about that alot.
Flare hyper.

(03:46):
Flare Hyperintensity.
So MRIs have a bunch ofsequences we use for different
things.
It's all based on these systemsof measurement worked out by
very smart people in theseventies and eighties where you
send magnetic pulses throughstuff and whatever signal you
get back from water moleculeshelps you sort of determine what
you're looking at.
Flare is a special sequence weuse to try to look.

(04:07):
For hyperintensities,hyperintensities usually for us
points to something that iseither temporarily injured or
permanently injured.
We, we often have to use theclinical context to figure out
why.
So for example, if a young manwere to have swelling after
gamma knife radiation, he wouldhave flare hyperintensities for

(04:29):
a while.
I, I would tell you, I hopethose flare hyperintensities go
away.
I'm not sure if they would.
It points to dysfunction, maybeinjury, and we don't know if
it's permanent or temporary.

Raylene Lewis (04:39):
Okay.
And mastoid effusion.

Dr. Stuart Fraser (04:42):
The mastoid air cells are near your ears.
Mastoid.
Effusions might mean you have a,you might have a little
sinusitis or ear infection orsomething and you're getting a
little swollen.
That, that would commonly be it.
There's a lot of otherconditions that maybe the ear,
nose, and throat up docs wouldknow better than me.

Raylene Lewis (04:58):
Okay.
And then foci of diffusion.
F O C.

Dr. Stuart Fraser (05:02):
Ah, yes.
Doctors, again, for whateverreason, like to talk about
single isolated things or thecenter of something as a focus.
And if there are a few, we'llcall them foci.
If you have a foci of restricteddiffusion, that means there's an
area in the brain where they'reseen that water molecules aren't
diffusing the way they expect.
Same thing, that could be atemporary or permanent injured

(05:25):
part of the brain.
Sometimes you, you just have towait and see if the diffusion
restriction comes back normally.

Raylene Lewis (05:31):
Okay.
Okay.
And then obviously any midlineshift is bad, but at what point
does midline shift get reallybad?

Dr. Stuart Fraser (05:38):
Well, it really depends on the clinical
context.
So there's these big landmarktrials that in adult stroke have
worked out where we said, oh,once it gets to a centimeter,
You gotta operate, you have torelieve pressure.
There are situations where maybeless than a centimeter you have
to operate.
There are situations where maybeslightly more you won't have to

(06:01):
operate.
Each person's probablydifferent.
The the reason we worry aboutmidline shift is again, brain
has to stay in sort of a veryspecific spot.
If it starts getting pushed outof where it's supposed to be,
it'll start pressing onunrelated blood vessels.
And then you can start gettingstrokes.
So the, the blood vessel isthat.
That would be caused by masseffect.
Yeah.

(06:21):
It would have to be, it has tobe pretty extreme.
For example, when I attend, Iintend on the pediatric
neurology service and also onthe adult stroke service on, on
the adult stroke service.
We'll be doing those surgeriespretty often because a lot of
adults will have big strokesand, and they'll need to have
the pressure relieved.
And kids, it's, it's much morerare and especially in babies.

(06:45):
Babies have a little pop-offvalve.
It's called the fontanelle.
So they, they very often won'tneed surgery, even in pretty,
pretty big lesions with a lot ofmass.

Raylene Lewis (06:55):
Okay.
Okay.
Here's a quick question that a,a parent had for kids who have
had.
Brain vessel disease early inlife, like for diagnosed with a
v m or some of these othermalformations, do they have to
worry about a higher risk ofaneurysm later in life?
Because the walls of those bloodpressures were stretched so much

(07:15):
previously with high blood flow.

Dr. Stuart Fraser (07:18):
So, not to my knowledge, but it would be very
case dependent to be honest.
You know, pediatric stroke as afield of systematic study has
really only taken off in thepast 20 years or so.
It'd be hard to say.

Raylene Lewis (07:32):
One question that a parent had was the role of,
and I don't know this word, I'mso sorry.
Hemos d Hemos.
Yes.
And superficial cys, if it canprevent recovery.
After stroke or cause lastingdamage on nerves?

Dr. Stuart Fraser (07:48):
So that's a good question.
I'll start by saying that Idefinitely understand worrying
about that.
Absolutely.
This person is veryintelligently asking is after
there's a rupture, there tendsto be this leftover iron.
So when you have bleedinganywhere in the brain, the brain
immediately starts trying toclean it up.
That those free iron moleculesand hemoglobin that is toxic to

(08:10):
brain cells, they don't like it.
And we know that from, frommouse studies, these cells will
go out and start eating up allthat iron and try to get rid of
it as much as they can.
But if you look at MRIs ofpeople who have had a bleed or
several bleeds there will beleftover iron molecules usually
around the outside, but youcould also get deposition in a
bunch of places That's calledsuperficial cirrhosis.

(08:31):
We don't.
Have great treatments to get ridof that stuff that I know of.
What I usually tell parents isthat, This is the scar left
over.
As far as I know, it's notgetting in the way of anything
else, and we just don't thinkabout it.
We just think about recoveringfrom the stroke now.

Raylene Lewis (08:50):
All right.
Let's switch gears for just alittle bit and talk just really
briefly about epilepsy.
My first question out therewhich I think the answer is no,
based on my experience, is that.
Okay.
Is there any way a parentlooking at like a 20 minute e e
g result that's being done inthe hospital or can see or tell
anything from, from reading thatthose papers, how do they read

(09:11):
those papers?

Dr. Stuart Fraser (09:12):
Yeah, they have to train for a long time.
So all neurologists should betrained a little bit how to read
EEGs.
Mostly they, they start us withthe basics and the emergency
stuff.
And I gotta tell you, it washard.
The epileptologists, mostacademic centers have people
that I.
Focus specifically on difficultto control epilepsy, which means
they read EEGs.

(09:33):
Most of the time it takes themhours and hours and a couple
extra years of training to getreally good at it.
What I usually tell parents whenthey ask me,'cause I've, I've
had people staring at that thingand should I be staring at that?
I, I tell them, don't let thatbother you.
Someone's looking at that.
Look at the person that you lovewho's in the bed in front of
you.
And when you see something inthat bed that you think is a

(09:55):
seizure, let the epileptologistdo the other part because
you're, press that button you'regood at, yeah, press that
button.
You're good at taking care ofyour child.
Let us try to take care of theeeg.

Raylene Lewis (10:04):
Okay.
And then just one more thing onthe epilepsy side, a lot of
parents epilepsy's superconfusing and they don't know
what to look for or how to tellif something is a seizure or
what a seizure is out there.
Do you have a site that youcould recommend or some general
advice for parents who have theconcern?

Dr. Stuart Fraser (10:23):
American Epilepsy Society is, is a great
place.
I can certainly recommendchecking out their, their parent
information section.
Seizures are, So there's themovies, which get it wrong.
As you know, it's not shakingyour whole body, you're not
limp, your eyes don't close.
They can present in a lot ofdifferent ways.
So what it comes down to is aseizure is brain cells that are

(10:46):
firing too fast and too much.
Whichever brain cells are doingthat are what causes your
symptoms of your seizure.
So if it's every brain cell atall at once, we call that a
grand mal seizure and your wholebody is stiff, your eyes are
open.
You might bite your tongue, youmight wet your pants.
Because every muscle in yourbody is being told by every
brain cell in your body to moveat once.

(11:08):
If they're quote unquote focal,they're only coming from one
area, then it starts gettingcomplicated.
There are seizures that mightmake you just look to the right.
A second.
Second and then come right back.
There are seizures that mightmake you only move your hand.
I've had people that have whatwe call partial status
epilepticus, where the hand isseizing, but they can still talk
to me.

(11:28):
It's very, very complicated andthat's why at least with me I do
a lot of EEGs.
If I'm not sure you, you can'tlive your whole life hooked up
to an e e g.
Seizures, we know get in the wayof normal brain function.
So if someone is doing somethingfunny, especially If they can't
remember it.
That's usually a good sign thatyou should look.

(11:48):
This might have been a seizure.

Raylene Lewis (11:50):
Okay.
Okay, so let's move briefly toischemic stroke in infant.
Okay, sure.
I had a couple of questions donethere.
One of the questions was, isthere any indication the
mother's placenta could havedone something that is the cause
of the stroke?

Dr. Stuart Fraser (12:04):
So the most common type of stroke.
I take care of is a child whohas a stroke right when they're
born.
And the most common of thosetypes of, of strokes is the
arterial ischemic stroke, whatyou're talking about, they're
really common.
If you take all strokes right atbirth, it's one in 1100 babies.
That's.
That's really common is, is themost commonly quoted number and

(12:26):
one in about 3000 or so willhave that, that big blood clot
that forms in the brain, thatthat will cause seizures and
maybe weakness later in life asto where those blood clots are
coming from.
That is the question we stilldon't have an answer to.
There's a lot of theories.
I don't think any of them havebeen proven definitively.
I personally think.

(12:46):
Placental factors are probablyvery important in the
pathogenesis, but I also wannastress that it is not mom's
fault in any way.
If this does happen, it's not'cause there's something wrong
with your placenta specifically,or something wrong with your
body.
It just.
It just happens.

(13:06):
And the vast majority of thetime we never figure out a
definite answer and we just endup having to blame what we
always have been blaming it onfor probably since these were
first recognized as cerebralpalsy in the 18 hundreds, they
just happen.
Being born is one of the mostdangerous things any of us are
ever gonna do.
And, and that is one of the, therough things that can happen
with it.

Raylene Lewis (13:26):
So ethology is, Is finding out like how these
things happen.
Yeah.
But there isn't like a set ofstandard tests is kind of what
you're telling me that peopletypically do.

Dr. Stuart Fraser (13:35):
Oh, that's a good question.
So there is a set of standardtests we do.
So those, at, at least in theUnited States, I like to follow
the American Heart Associationrelease the scientific
statements saying We think youshould do these tests.
We, we don't think you should dothese other ones'cause.
We, it's never been shown tohave a connection.
Generally, if you are thoughtto, if you're thought to have a

(13:56):
stroke right at birth, you willget an m r I of the brain and an
m r a of the brain.
We're looking to confirm thatit's a stroke and also to make
sure the blood vessels don'tlook unusual and they almost
always will look normal.
The baby's had a stroke, but theblood vessels look totally fine
because probably the strokehappened a while ago.
And we're just seeing the aftereffects.

(14:17):
You'll get a picture of theheart taken.
Any baby who get has a strokeright at birth should have a
picture of their heart taken.
They're looking for abnormalformations of the heart.
So congenital heart disease, wecall it.

Raylene Lewis (14:29):
'cause it can create clots, right?

Dr. Stuart Fraser (14:31):
It can create clots, pumping.
Okay.
Yeah, exactly.
So the one sort of cause ofstroke at birth that we can do
something about, or one of thefew ones is if a baby is born
with an abnormally shaped heart,they usually would need to
immediately see an advancedcardiac team who would talk
about surgery options andinitiate cardiac care and that

(14:51):
sort of thing.
And then the last thing we dois, or the last couple of things
is we will, we.
Each baby where this happensshould get an e, e G.
It probably should be a long oneright then there at birth.
Usually because babies that havestrokes don't have weakness on
one side of the body right whenthey're born, that comes later.
They usually have seizures.

(15:12):
And they need to be treatedbecause we wanna make sure that
those ongoing seizures don'tdamage other parts of the brain.
And they should get a few bloodtests, but not a big expansive.
This is very controversial and Ithink some people will disagree
with me on this, but theyshouldn't get a big expansive
workup for every possibleclotting disorder that exists.

(15:32):
I.
Because we've found over theyears that we're not finding
clotting disorders in thesekids.
Whatever is causing thesestrokes, it's usually not some
inherited clotting issue thatthey got from mom or dad.
It's something to do with beingborn.

Raylene Lewis (15:45):
Okay.
And the last kind of thing alongthat realm is, of course, newly,
within the last couple yearswe've had to deal with c Ovid
19.
Mm-hmm.
And so one of the questions thatwe had come up quite a few times
is, has anybody.
Had or known of any correlationto c Ovid 19 during pregnancy to
have any relationship to strokein a newborn.

Dr. Stuart Fraser (16:05):
So that's a really good question.
Working with the lead authorwas, her name is Lauren Baslow.
Dr.
Baslow is in, in Philadelphia.
She's a really talented doctorand scientist and she published
a couple of papers that sheworked with a lot of us on
sharing our data.
We were trying to find anassociation between covid and
stroke and kids.
And in a statist, we like to saystatistically significant way,

(16:26):
doing a bunch of statistics.
Tests.
Did we find a, an associationbetween the two?
The answer was no.
There are a few cases though.
Just because we didn't find astatistically significant
association doesn't mean theremay be some in extreme cases
because there are children thatI've run into who had C O V I D
had a really bad response to it.

(16:47):
In addition to being very sick,had a stroke in terms of mom
getting covid right at birth andit causing strokes in babies.
I can tell you because I dospend time in the adult side, in
the, in the really rough years,we were seeing a lot of bad,
very unexplained strokes.
In young men and women who hadcovid and they were just

(17:09):
clotting everywhere.
We did our best to try to savewhat we could.
I'm not really seeing that muchanymore, and I haven't heard of
anything about mom getting covidright before birth and it
causing a problem.
For baby.
It doesn't mean there's not acase report out there or
something like that, or someonemight have had that experience,
but definitely isn't a big thingthat has popped up in the
literature that I've seen.

Raylene Lewis (17:30):
Okay.
No, I appreciate it.
Thanks for explaining that.
I know a lot of people, youknow, have questions when it
comes to covid and stroke'causeyou hear about, you know, blood
clots and everything else.
And we will look forward to nextmonth's episode where we will
conclude our discussion with thedirector of the Pediatric Stroke
Program with McGovern MedicalSchool at UT Health Houston.

(17:51):
The focus of this month's thingsto think about is based on the
Children's book, the Boy theMole, the fox and the horse.
A fabulous book of wisdom byCharlie McKessie, published in
2019.
It is a tale of friendship,self-discovery, and embracing
life's challenges.
The story follows the journey offour unlikely companions, a

(18:13):
curious boy, an introspectivemole, a wise fox, and a gentle
horse as they embark on anenchanting adventure through the
wilderness.
Each character possesses uniquequalities and perspectives, and
together they navigate the upsand downs of life's challenges,
offering comfort, support, andcompanionship to one another.

(18:36):
One of the central themes of thebook is the power of friendship,
which transcends differencesdespite their diverse
personalities and backgrounds.
The Boy the Mole, the fox andthe Horse Forge a deep Bond that
teaches us the value ofaccepting and celebrating our
friends for who they are.
The characters often share theirinnermost thoughts and fears

(18:59):
with each other, promoting asense of vulnerability and
emotional honesty.
This is a reminder for us toopen up about our own feelings,
which will foster strongerconnections with others.
Throughout this story, thecharacters engage in meaningful
conversations that lead toself-discovery and
self-acceptance.

(19:19):
Their interactions remind usthat it is important to
understand ourselves,acknowledge our strengths and
weaknesses, and learn to becomfortable in our own skin.
Life is full of challenges, andthe character's journey
throughout this book mirrorsthis reality.
They face setbacks, doubts, anduncertainties, yet they find the

(19:40):
inner strength to preserve.
This serves as a reminder to allof us that even in tough times,
we can find the resiliencewithin ourselves to overcome
obstacles.
This book frequently emphasizesthe beauty of living in the
present moment.
The character's relish thesimple joys of life, which

(20:00):
reminds us to be more mindfuland appreciative of the world
around us.
The interaction between thecharacters are infused with
kindness, compassion, andempathy.
Their actions highlight theimpact that even small acts of
kindness can have on others.
Their actions inspire us tospread positively and make a

(20:21):
difference in our own lives andin the lives of those around us.
The boy, the mole, the fox, andthe horse is more than just a
book.
It offers wisdom andinspiration.
It teaches about friendship,vulnerability, self-discovery,
and the importance of embracinglife's challenges.

(20:41):
Thank you, Charlie, forreminding us of these very
important life lessons.
And as always, if you havequestions or have a topic you
would like to hear about, don'tbe shy.
Share it in the comments and letus know.
And if you liked what you heardtoday, please go online and rate
this podcast.
Remember, you're never walkingthis journey alone.

(21:03):
Take care y'all.
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