For Jayne

December 30, 2009

Jayne,

I am posting this information from my local autism group. She said I could. I

thought maybe you could tell her about 's seisure like events. I think

she is frustrated that she is not getting answers. I know you have been through

this.

Holly

Date: Mon, 28 Dec 2009 22:57:21 -0500

Subject: need some guidance/advice

From: frankiesmom@...

To: autismyorkchatgooglegroups

Hi everyone!

Hope you are all enjoying the season!

I have a question, does anyone have a kiddo that has seizures? My son Francis

age 5, PDD-NOS/ADHD had his first in November and one again this weekend while

we were visiting family in NC. I do go to Wellspan Peds Neuro, ( he's been

followed there since he' 18 mos), but they really don't see anything in the

EEG's or MRI's. I know they are great, but want to know if there is more I can

be looking into. They've decided to put him on 25mg of lamictal. I have also

tried to get an appt with the Pediatric Heart Group.........I was told that if

he sees his pediatrician, they would have heard something with " that thing they

put on his chest to listen to him " .........uugh!!!!!!!! I hate it when they

treat you like an idiot!!! But, I digress.... any ideas I haven't addressed, or

avenues I should explore?

THANKS FOR LISTENING!

ellen

--

Ellen

December 30, 2009

Oh geez, " the thing you put on his chest!! " GRRRRRR!

So do they know what type of seizure he had? They are positive it's a seizure?

Getting an EEG is tough because it's showing what's going on in that particular

moment. J had an " episode " while hooked up to the EEG machine and the neuro

said it showed " slowing " . He felt confident that wasn't having seizures

though.

The things I would have this mother do would be have them comb his MRI and MRA

(if he's had one) looking for MoyaMoya syndrome. I would be curious what the

symptoms are that Francis is showing. Ruling out MoyaMoya is just a good idea

if they've already got the MRI/MRA films to look over.

Does Francis have any sort of heart abnormality that you know of or was he given

a clean bill of health in the heart dept at birth?

's situation was showing as a left sided droopiness event. They thought

he was having focal seizures when we took him to the ER with the first episode.

I knew in my heart it wasn't a seizure though - it was so left side contained,

so TIA like (Transient Ischemic Attack/mini stroke). It was always his left

side drooping.

Finally the neurologist thought we should check out his heart, just to make

sure. Most neuros will follow the protocol of double checking the heart if

neuro symptoms are showing without answers.

Thankfully they did because they discovered he has a giant aneurysm of the

atrial septum. They also discovered a few small holes in the atrial septum but

not a huge deal compared to the giant aneurysm that is between the two upper

chambers. It's basically supposed to be a straight line dividing the two upper

chambers and his is a " c " shape, acting like a big spinnaker sail, floppy and

thin. It flops to one side, forming a " c " and letting the blood pool within

that sac. Then the blood has an increased risk of clotting there and when the

pressure in his heart changes and the spinnaker flops to the other side making a

backwards " c " , whatever clots have formed there fly out and go to his brain, ie:

the many TIA's he's had.

Once the problem was discovered he was put on a baby aspirin a day in hopes of

thinning his blood enough to keep the TIA's at bay but it wasn't enough - he had

three TIA's in two weeks after that so they put him on three baby aspirin and he

has not had an TIA's that we are aware of since then.

What we did find out via blood tests was that his Protein S is low ( a clotting

level). We went back in before Christmas and did some more labs to check things

out - make sure he doesn't have a clotting issue on top of the aneurysm. They

drew labs to check his Factor V Leiden and Pro Thrombin Gene Mutation.

We meet with the surgeon on Jan 11th to discuss the surgery plan, we do know

that this can be repaired via transcatheter rather than open-heart now. Thank

goodness! Then we meet Jan 13th with the hematologist to discuss his blood

issues. Jan 22nd is his surgery.

You can read more about the finer details and follow our journey on our care

page:

https://www.carepages.com/carepages/Hickey

That's 's story. I would tell the mom to keep pushing for answers. If

they are positive it is seizures then I would make sure they fully understand

everything the neuro is saying and that they fully agree with the meds, etc...

If they have not had his heart checked since birth, I would definitely have an

Echo done or if need be a TEE done. This was the case with , the Echo

only showed 80% of J's heart and made it look like he actually had a huge hole

in his heart. It wasn't until he was able to do the TEE that he could truly see

the problem. I would push for a referral to pediatric cardiology to rule out

any heart issues.

I would also have neuro comb his MRI/MRA for MoyaMoya. I have a mom contact who

has a daughter with MoyaMoya if it should be that. Will keep this family in my

prayers for answers and comfort.

Hope that helps. Feel free to have the mom contact me, I have no problem with

that.

Happy New Year all.

Jayne

>

> Jayne,

> I am posting this information from my local autism group. She said I could.

I thought maybe you could tell her about 's seisure like events. I think

she is frustrated that she is not getting answers. I know you have been through

this.

>

> Holly

>

> Date: Mon, 28 Dec 2009 22:57:21 -0500

>

> Subject: need some guidance/advice

>

> From: frankiesmom@...

> To: autismyorkchatgooglegroups

>

> Hi everyone!

>

> Hope you are all enjoying the season!

> I have a question, does anyone have a kiddo that has seizures? My son Francis