RE: Seizures

[Guest guest]

Hi Debra,

Thank you so much for your email. It is very helpful to hear other

experiences, it was so scary for me to see the loss of vitals in and

then I see that you've experienced this too!!!! I hope to take as much info.

as possible to the Neurologist on Sept. 11 to share with her other

information about what other CHARGERs are having.

also has Tetralogy, had a shunt at 1 mo. which caused a stroke and

left " dead spots " , they called them basil ganglia infarcts. This area

caused seizures until she was 8 mo. old, then they weaned her off of the

phenabarb and we've been fine until just last November and just a couple of

days ago. Her full Tet. repair was at 3 years old. Both these seizure

incidents were at night, within only 2 hrs. of her getting to sleep, so I

guess it's a night sleep study.

It's been frustrating having the Neurologist and Cardiologist argue back and

forth over cause. She's had several EEG's lately because she also suffers

from occasional migraines and they wanted to make sure everything was OK.

They all came back clear. After this first seizure in November she was kept

in and they did another EEG which this time showed some, but not significant

" Wave " activity in this old area, but the Neurologist felt it was sparked by

the heart, or breathing. An MRI was done and didn't show anything else that

we didn't already know. Cardiology did a EKG, and we went home with a

Holter, showed nothing of course. Frustrating!

Thanks again, I welcome any advice.

Pat

Re: We're Home

In a message dated 8/18/00 4:39:52 PM US Eastern Standard Time,

gsod@... writes:

<< I have

a lot of questions, not even sure what to ask. I'd appreciate you sharing

your experiences. >>

Pat,

Ask any questions, at any time. I'll tell you what I know about Tryny's

seizures and hopefully it will help. Tryny's seizures are from epilepsy and

from " dead spots in the brain " caused from lack of oxygen (until we had his

2nd open heart surgery to fix the tetrology of fallot when he was 2 yrs.

old,

his oxygenation was so bad that only about 1/2 was getting throughout his

body, including his brain) and " dead spots " formed. His seizures started at

8 months and have never stopped for more than a couple of months at a time.

He has been on 9 different medicines (4 of them now) and they will slow the

seizures down for a while, but then they come back bad (it's almost like he

becomes immune to the meds and they don't work anymore), That's why I am

pushing for the Diet.

His sleep studies are so they can study his seizure activity at night but

also to map his apnea. It's hard to tell which one is causing him not to

breathe. I can tell it's a seizure if he has only been asleep less than 3

hours (as his apnea doesn't kick in until he goes into rhym sleep). But

both

are just as scary as I have to bang on him for sometimes 15 to 30 seconds to

get him back. The bi-pap helps to regulate his breathing but doesn't do

anything for " when he isn't " . My hand banging on his chest is the only

thing

that helps there (and he is never consistent, some nights we only have a few

episodes but others I am pounding on him all night it seems like). That's

why his bed is right next to mine (at least I don't have to get out of bed

everytime).

Tryny has every kind of seizure, grand mahl, petite mal, convulsive, fever

(Tryny can't do anything 1/2 way, it's " all " or nothing) LOL. And I know

what you go through with " no pulse, no breathing and no heart rate " as Tryny

has had those more times than I like to count. The last one we worked on

him

for almost 2 minutes before the paramedics got here and they worked for

almost a minute before we got him back enough to even transport. His eye

sockets and lips were black, that one was the scariest.

You can request a daytime sleep study if the seizures are more prone to come

during the day than at night. Those are harder as you have to keep your

child up all night in order for them to sleep during the day for the test.

Also have your neurologist do an EEG and a MRI.

I get long winded I know, sorry. But if I can help in any way, don't

hesitate to ask.

Debra

" 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

20-22, 2001. Information will be available first in CHARGE Accounts, the

CHARGE Syndrome Foundation's newsletter. "

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

[Guest guest]

Pat,

Yes I indeed know how frustrating it is to have 2 " ologies " (whether it be

neurology and cardiology or 2 others) blaming the other for symptoms. I

battle with that all the time. What I have found helpful is I document every

seizure in a journal. I write down the date, the duration (as closely to the

second as I can get), what kind it was and all the signs (color, heart rate,

respiration rate " or the lack of " and how long CPR had to be given if any).

I then note how long the lethargic period lasted and how long the " nasty "

period lasted. I also keep track of Tryny's heart rate during the lethargic

period (as well as his respiration rate) every 15 minutes. Every time I go

to an appointment, the journal goes with us. This way I have proof and

documentation of every seizure. This stops a lot of bickering between the

" ologies " .

I agree a sleep study would be helpful. It may also help to see if any apnea

is occurring at night.

If I can be of any further help, just ask. I never mind sharing what I know.

Debra