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October 1, 2023 19 mins

Happy October to all our listeners. October is Brain AVM Awareness Month. As a reminder, A brain AVM is a tangle of abnormal arteries and veins, that do not have the needed capillaries in between the connections. If you would like more information on Brain AVM’s: AVM Alliance, an official non-profit, now has its own website www.avmalliance.org. On it you will find lots of information as well as personal stories. Last month’s Part two episode started with terms found on radiology tests doctor’s order and dove a bit into epilepsy, EEG’s and stroke in infants. Today’s episode will end the series with questions about stem cells and other therapies and programs for kids who have suffered a stroke. We will end today's podcast with a "Things to Think About” takeaway lesson from a special children’s book.

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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 our community.

(00:24):
Being a parent of a medicallycomplex child is an extremely
difficult path to suddenly findyourself on.
I'm Raylene Lewis, and my sonKyler suffered a hemorrhagic
stroke at age 15.
Thank you for joining us.
Happy October to all of ourlisteners.
October is Brain AVM AwarenessMonth.
As a reminder, a brain AVM is atangle of abnormal arteries and

(00:47):
veins that do not have theneeded capillaries in between
the connections.
Capillaries are So veryimportant because they slow
blood flow between high pressurearteries and low pressure veins.
Capillaries also deposit theoxygen from blood to the
surrounding healthy braintissue.
Without the capillaries, bloodis moving at a high pressure

(01:08):
from arteries into the veins.
which causes the vessels tostretch beyond their normal
size.
This weakens them and increasesthe risk of a vessel to tear,
which would spill blood intosurrounding brain tissue, thus
causing a hemorrhagic stroke.
Please help us spread the wordthis month about brain AVMs and
brain vessel disease.

(01:29):
Stroke has no age limit.
And if you would like moreinformation on Brain AVMs, AVM
Alliance, an official 501c3 nonprofit, now has its own website,
avmalliance,org.
On it, you will find lots ofinformation, as well as personal
stories.
We are also excited to announcethat you will soon be able to
find the link to all of thewebinars from the Pediatric

(01:51):
Stroke and Brain InjuryEducation Group under our For
Parents Help Desk.
Full Organizations section.
Their educational series bringstogether families and
professionals to learn togetherhow to support children to
thrive after stroke or braininjury, and they are constantly
offering new ways to enhance achild's development at home, in

(02:12):
school, and in the community.
Also, we wanted to let ourlisteners know there is
currently a vein of Galenmalformation genetics research
study going on.
Parents whose child has receiveda VOGM diagnosis and agree to
participate in the study areprovided a special Q tip to swab
their cheek and the cheek oftheir child.
If you would like moreinformation, you can find it on

(02:34):
the AVM Alliance website underResearch Studies or email us
info at avmalliance.
org and we will send you thelink to sign up for the study.
And for our internationallisteners with a VOGM diagnosis,
yes, you are also eligible andencouraged to participate.
The Q tip samples can be sent toyou overseas.

(02:55):
And before we get started withour final interview on our The
Doctor Is In series, Going overquestions parents submitted to
this podcast for our medicalprofessional, I wanted to let
everyone know that our 2023 Hopeon the Horizon fundraiser is in
full swing.
In order for AVM Alliance to beable to continue this podcast,

(03:15):
The website and the services weoffer, we desperately need the
support of our community.
Please go to our website whereyou will find a donate button or
learn more about us and donateby going to brazosvalleygives.
org slash avmalliance or find usunder nonprofits under GoFundMe.
AVM Alliance is a 100 percentvolunteer non profit

(03:37):
organization, and you can seeyour gift's impact by following
us on social media.
Last month's Part 2 episode ofour Doctor Is In series
continued with terms found onradiology results that doctors
order and dove a bit intoepilepsy, EEGs, and stroke in
infants.
Today's episode will end thethree part series with questions

(03:59):
about stem cells and othertherapies and programs for kids
who have suffered a stroke.
We will end today with a thingsto think about takeaway lesson
from a special children's book.
With me today, I have thedirector of the Pediatric Stroke
Program with the McGovernMedical School at UTHealth
Houston, Dr.
Stuart Frazier.
Dr.
Frazier, thank you for joiningus.

(04:20):
I really appreciate the invite.
After, you know, stroke, there'sdifferent stem cells.
Which one is the best type?
Do they work for stroke?
What have you been seeing?

Dr. Stuart Fraser (04:30):
So there's a lot of different types and
there's, there's a lot ofresearch that's going on with
stem cells and stroke, includinghere at UT.
The floor below me, acollaborator, Dr.
Savitz has been working on thatfor a long time, trying to find
ways to use stem cells to helpstroke survivors.
The mechanisms are complex and Iam not the world's foremost stem

(04:51):
cell expert.
I'll try to give the second orthird grade version and most of
it will be right.
As of yet, we don't have anylevel one or I say top level
evidence that we have found away to use.
stem cells to improve outcomesin stroke.
I think there is a way.

(05:12):
I don't know what it is yet.
And they're working on that hereat UT.
They've worked on it in theNetherlands.
We have been working on tryingto set up trials at least to try
to find ways to help kids whohave had stroke with stem cells.
I can say as The best evidenceso far points to, they, when

(05:32):
stem cells would be helpful isprobably administration right
when the stroke happens.
We don't have a lot of strongevidence that two, three, four
years later, they'd be able tomake brain cells regrow or
change in, in a meaningful way.
So that would be the big thingI'd say to, to caution parents

(05:53):
that are out there.
Most of the trials that I'veseen have that.
have had promising preliminaryresults have been looking at
right when a stroke happens.
We are giving stem cells and wehave shown that it's safe.
And there's also a little bit ofevidence that maybe this can
reduce some of the injury thathappens right at stroke.

Raylene Lewis (06:11):
Define right when within the first six months,
within the first six weeks,within the first six hours.
Usually

Dr. Stuart Fraser (06:17):
within the first couple of days.
We break it up into timeperiods.
There's the hyper acute phasewhere we're still talking about
saving brain cells that are atrisk but haven't died.
That's the first few hours.
If you finished all your savingsteps you might now be in a
phase where you're trying toprevent secondary injury to
brain cells that are near thebrain cells that already died.

(06:38):
So preventing seizures, keepingthe patient's blood pressure up
so that they're getting a goodperfusion to the rest of their
brain.
I'm starting medicines to thinthe blood often so that we're
not getting more blood clots.
And that's the first couple ofdays.
Then you start talking aboutrecovery and reorganization of
brain cells.
The first few months seem to bevery important, but in my

(07:02):
experience, and I 30.
You can make changes to yourbrain years after your stroke.
It just may not be as easy asright at the beginning.

Raylene Lewis (07:14):
Sure.
Same thing for kids, right?
It's easier for kids to learnmultiple languages when they're
young.
It's just the way the brainworks.
I think kids tend to recover alittle faster

Dr. Stuart Fraser (07:21):
than Yeah, yeah.
Yeah, there are sort of rules ofthumb for recovery, but about,
Oh, you can't You know, easilyrecover language after six years
old or 12 years old or whatevermy experience.
Kids break those rules all thetime.
So I don't worry about them.
I say you, you do you, you'regoing to figure it out.

Raylene Lewis (07:39):
I love it.
Okay.
Now, in general, continuing withtherapy, how do parents find
organizations or hospitals thatoffer specialized rehab programs
after the initial rehab wasdone?
And what I'm talking about is inparticular, Boost programs, like
we had one mom who just finisheda month long constraint therapy
program for her kids.

(08:00):
And another one did a four weekLSVT speech program.
How do we know what's out there?
How do we get connected withthose?

Dr. Stuart Fraser (08:07):
Yeah, that's tough.
You have to ask you, you have toask people that you trust.
So current therapists, yourdoctors, if you're lucky enough
to be at a place that has aspecialized stroke program or
specialized stroke therapist,she's probably going to, he or
she is probably going to be inthe, in the know on those sorts
of things.
I encourage parents to joinlocal and non local parent

(08:27):
support.
Groups and you know your kids towhen they're ready.
It's nice for them to get incontact with kids.
You've been through the samething that they can.
They can also tell you.
I don't know of a centralizedregistry of special constraint
programs.
I know, you know, we know what'shere in Houston because Well,
our therapist Anna checks for meand you guys tell me so we keep

(08:50):
a running list.
If research is something elsethat you're interested in, oh,
we want to try research therapyprograms.
You can also go tonationalclinicaltrials.
gov.
You can type in the keywordspediatric stroke and you can
look through yourself.
Parent websites are also great.
And then there's two, I'm notgoing to have to put in a plug
for AVM Alliance because we'reon the AVM Alliance podcast, but

(09:10):
I'll also put, I'll put in aplug for.
the International PediatricStroke Organization.
They're wonderful and they tryto keep as an up to date list as
they can.
And then here at my desk theInternational Alliance for
Pediatric Stroke.
You can go to IAPediatricstroke.
org and just learn a lot aboutwhat's out there.
Recognize that a lot of theseprograms are great.

(09:31):
Not all of them are paid for byinsurance, which is rough.
So you sort of have to figureout what is feasible and best
for you and your child.

Raylene Lewis (09:39):
Now, speaking of that at UTHealth you guys are
running a couple of programsthere, right?
Do you want to tell me aboutthose real quick?
Sure,

Dr. Stuart Fraser (09:47):
sure.
We'd be happy to.
So we, we are recruiting for tworehabilitation trials for kids
with stroke right now.
So one of them is iAcquire.
So iAcquire is a national studywith multiple centers
participating.
Where kids who have a strokeright at birth, just like we
were talking about, and whodevelop weakness on one side or

(10:09):
the other can enroll in thetrial where they're offered
therapy.
It's an intensive therapyprogram.
Kids get anywhere from threehours a day to six hours a day
of therapy, and they do what'scalled constraint induced
movement therapy, which we weretalking about earlier.
Where, you take the quoteunquote strong arm or good arm.
And you put it in a cast forthree weeks and make them use
the other

Raylene Lewis (10:29):
one.
I didn't realize that's what allwas

Dr. Stuart Fraser (10:31):
involved.
Yeah, so there's a lot ofdifferent levels of constraint.
I, I am a big proponent of youcan retrain your brain intensive
works.
And so the study is for toddlersuntil or eight months old until
36 months old.
They can be enrolled andparticipate in the program.
Where again, they, they get onemonth of between three and six

(10:54):
hours of therapy per day.
It is a research program.
So you'd, you have to askparents about, you know, what
the, what they saw in terms ofthe benefits.
Cause I'm not supposed to tellyou how great and wonderful it
is, but I do think that it wasvery well thought out and we had
a lot of good data beforesetting it up on what kids need
to achieve their maximumpotential.

(11:15):
And we found that The brain isvery plastic during the toddler
years, and it's really worthtrying to try to reduce
disability as much as we can forwhen you get older and you're
playing soccer and going to promand getting your first job and
all that stuff.
It helps to have a little bitmore strength in one ear.

Raylene Lewis (11:33):
Okay, and was there a second one

Dr. Stuart Fraser (11:34):
also?
There was, yeah.
So, the second study we're doingis a newer study that is coming
just out of, out of UT Health.
So, we talked about there is a,a rehabilitation therapy program
going on for toddlers who had astroke right at birth.
To date, there haven't been anyrehabilitation trials that
focused on kids who haveweakness of one side of the body
from a stroke that happenedafter birth.

(11:57):
So, we started that here, and wejust opened about three weeks
ago for enrollment.
where we are offeringrehabilitation therapy on a
research basis where patients doabout 10 hours of it and at the
same time they're receiving thisadjunctive treatment that's
called transcranial directcurrent stimulation.

(12:17):
So that is a technique that isbeing studied in the adult
stroke world, in the CP world,but it hasn't been done for
childhood stroke yet, wherethese little electrodes or
sponges, we call them, go on thebrain and they release a very,
very, very small amount ofcurrent.
The idea of which is to try toencourage brain cells to be a

(12:39):
little bit more responsive totherapy for the next couple
hours after the current isreleased.
It's been done in hundreds ofkids and thousands of adults
never had a major adverse event.
And so we saw and thought, wow,this seems really safe.
And a lot of the data seems tosuggest that it's effective.
Why aren't we offering this to?
Kids who had stroke.
So what's the age range on that?

(13:01):
That's for children that are agefive to 19 years old.
So anyone who had a stroke aboutone month after they're born or
later, who is five and 19 andhas weakness on one side is
potentially able to

Raylene Lewis (13:11):
participate.
Okay, and just so anybody who'slistening will know, I will
include links for people who, ifthey're interested in knowing
more about either one of theseprograms where they can get to.
The older program, you kind ofhave to be in the Houston or
surrounding area, but theiAcquire is more broad based,
right?

Dr. Stuart Fraser (13:29):
So, yeah, iAcquire is very broad based.
There's a lot of sites all over.
You can look up the list andfind the one closest to you.
We are, unfortunately, the onlysite in Texas and there's, there
aren't any sites within 500miles of us.
So we have had people that havehave driven in or flown in from
outside the state for it.
And of course, we're always,anyone who's able to come,

(13:52):
we're, we're happy to work withyou.

Raylene Lewis (13:54):
Perfect.
So you can fly in, it's about 10hours of this therapy and then
fly out.
Yeah.
So

Dr. Stuart Fraser (13:59):
for, yeah, so for, I acquire, it is, it's
about a month long where you'dhave to be in Houston.
And then there's a couple othervisits after that.
For TOPS, the current versionis.
About a week, so you'd have tocome in maybe the Thursday or
Friday before, stay the week andyou'd be able to leave the
Monday or Tuesday afterwards, ifyou were flying in from outside
of Houston.

Raylene Lewis (14:18):
Okay, and TOPS is ages 5 19

Dr. Stuart Fraser (14:22):
years old, yes.
Okay.
so

Raylene Lewis (14:29):
one last big question for the day.
Tell us, as parents, is thereanything in particular that is a
do or don't do when we're inyour office and being seen with
the kids?
Like, give us a couple of just,you know, general rules of thumb
that say, gosh, I hate it whenparents do this, or gosh, I
really wish parents would comewith like this prepared, or, I

Dr. Stuart Fraser (14:48):
mean...
I love all of my patients andall of their parents.
They would never annoy me.
You know, my experience is...
This is a strange thing to havehappen.
No one expects it when ithappens.
A stroke, a bleed, an ischemicstroke, it just happens.
And every parent has PTSD that Imeet.

(15:09):
Because it's like that.
It's a lightning strike.
And it's dramatic.
And it stinks.
It's really rough.
I think I, sometimes I haveparents that they don't want to
inconvenience me too much.
Or they don't ask too manyquestions.
And what I tell people is.
This is my job.
I really care about this.
So you can, you can ask me, youcan write it down beforehand.

(15:32):
If you want to email about it,we can email about it.
I'm happy to do that.
This is, this is what I reallycare about.
This makes me really happytaking care of kids that, that
have had this happen to thembecause they deserve it.
And someone has to do it.
So it might as well be me.
So if you're wondering what todo, I'd say, Just come ready to

(15:53):
ask what you feel you need toknow to help your child and we
will try to help your child.
I love it.

Raylene Lewis (16:00):
That's the perfect answer.
And speaking of a parent whodefinitely has PTSD from their
kid's diagnosis and then all theproblems even after that, you
know, trying to get him better.
I know we're worriers.
We're natural worriers.
And so in addition to worryingabout our kid.
I think as parents, we feellike, you know what, we need

(16:21):
you, the specialists, way morethan you need us, so we try to
be extra careful to keep youhappy.

Dr. Stuart Fraser (16:27):
Well, that's sweet of you guys.
And I couldn't ask for a bettergroup of kids to take care of
and a better group of parents totake care of them.
So you just keep doing your bestand be the advocate.
I don't think I've ever had aparent be mean to me in a stroke
interaction because...
What are you going to be madabout now?

(16:47):
Like it, you know, everything'sdifferent.
This is so dramatic and soimportant.

Raylene Lewis (16:52):
Well, one thing I'll say for sure about every
stroke parent that I've met iswhen people, you are around
other parents who complain aboutthings or who are unhappy about
things, it's like, hmm,perspective, you know, things
that should bother me orbothered me back in the day pre
stroke are kind of not important

Dr. Stuart Fraser (17:09):
anymore.
Yeah, right.
Exactly.

Raylene Lewis (17:12):
Well, thank you so much for coming on and
talking with us and answeringour questions and taking time
out of your day.
It's sincerely appreciated.

Dr. Stuart Fraser (17:21):
Yeah.
Yeah.
I love the opportunity.
Thank you so much for invitingme.
Let me know if there are followup questions.
I'll try to do my best.
Some of those were, some ofthose were tough.
I'm not going to lie.
You, you have some sharp cookieson the, on the other end of that
keyboard.
So let me know if anything elsecomes up.
Okay.
We would love to

Raylene Lewis (17:38):
have you back.
Thank you so much for joiningus.

Dr. Stuart Fraser (17:41):
Thank you.

Raylene Lewis (17:45):
The focus of this month's things to think about is
based on the children's book.
What do you do with a problem?
Written by Kobi Yamada.
Problems shape us, push us, andhelp us to discover just how
strong.
Brave and capable, we reallyare.
Even though we don't always wantthem, problems have a way of

(18:05):
changing us in unexpected ways.
The more we worry about ourproblem, typically the bigger
the problem becomes.
And a problem is not somethingwe can typically hide from or
avoid long term.
In fact, trying to do so canoften make things worse and make
us feel unwell.
But when you decide to face yourproblem, you might also discover

(18:27):
that most problems also have anopportunity for something good.
And when you find it, you learnsomething about yourself, too.
What we choose to do with ourproblem is up to each one of us.
Thank you, Kobe, for thislesson.
And as always, if you havequestions or have a topic you
would like to hear about, don'tbe shy, share it in the comments

(18:49):
and let us know.
And if you liked what you heardtoday, please go online and rate
this podcast.
Remember, you're never walkingthis journey alone.
Take care, y'all.
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