Cyndi

[Guest guest]

Cyndi,

So nice to hear about , too. Our boys are growing up!!! It

seems like you are getting some good input with all that's been

going on with . I feel like I have been a " lurker " lately. I

shared that I had an ear operation at the end of April. I am pretty

much back to normal now, but trying desperately to catch up on

everything that got sidelined while I recuperated. And for some

reason, it seems to have resolved now, I was getting messages on the

list that were from long ago mixed in with up to date, so it was

hard to follow everything.

I have thought of you often, and , and pray all is going well.

Hugs,

Donnell

>

> DJ turned 13 on May 10th. Happy Birthday to you, Happy Birthday to

you,

> Happy Birthday Dear DJ Happy Birthday to you, and many more. Sorry

we

> missed it. Cyndi B

>

[Guest guest]

's EEG just showed abnormal and no one explains that. SHe's on

Depakote sprinkles, 125mg x 2 in the AM and 125mg x3 at night. We have

to have a repeat EEG end of July. Any tips on how to make this better?

Basically, the first time, we had to burrito wrap her, I had to lay on

top of her and hold her head and still it took 2 hours. She has to

wear arm immobilizers as well. This time, neuro gave us a muscle

relaxant, but I am scared to use it!

, 5

[Guest guest]

Margaret, does a seizure that looks like what diabetic do. Like

he is in a drunken stupor.He gets giggly,giddy, and falls of the

chair.He does not respond to anything that you say to him.His eeg

have never shown them that he was having seizure but I know that it

is. I video taped the seizure for the neurologist and he confirmed.I

am sure you have read that it is typical of kids with autism to have

seizures.Have you read McCarthy's book? Her sons seizures do

not sound anything like Gareth or but there are different types

as you said. But she does speak of the fact the Dr.'s never

mentioned seizure activity as being common with autism.I know you had

to be devasted by what happened I know I was. Poor Gareth have a

terrible headache. Did they give him something to help his head?

Prednisone is pretty scarey to use. used this alot for breathing

difficulties when he was younger.The side affects are many.Gosh I am

sorry you guys are going through this.Margaret this was taken from

webmd about Predinisone. I have taken it out of context but I am just

showing that it can cause seizures. I hope this helps. WEb MD have

serious side effects.I know topamax is supposed to stop seizures.So

Gareth never had a seizure before the day at school?

Tell your doctor immediately if any of these unlikely but serious

side effects occur: black stools, bone pain (fracture), " coffee-

ground " vomit, easy bruising/bleeding, heartburn, increased thirst

and urination, irregular/fast/pounding heartbeat, menstrual period

changes, mental/mood changes, muscle weakness/pain, persistent weight

gain, puffy face, seizures, signs of infection Cyndi B

>

> <<Margaret, Is Gareth still having seizure? Is is caused by the

medicines or

> did it start before the meds? When he had the seizure did he fall

on the

> floor?............ Does he black out? I know has some kind

of seizure to

> which is common for autistic kids but whenever they do the eeg it

never shows

> up. I

> know he is having one.>>

>

> Hi, Everyone.....Cyndi.....Gareth has only had two seizures that I

know of.

> The first was 10-15 seconds.....in Jan.and about a week after

coming off a

> 21 day run of Prednisone. His EEG showed 'multiple absence

seizures' and he

> was put on Depakote. The Neurologist said he had obviously been

having them

> for some time. He put on so much weight that the doc took him off

the Depakote

> a month ago and put him Topamax. The therapeutic dose made him a

zombie so

> he lowered the dosage but last Wed he had a major seizure at

school....lasting

> over 5 minutes, they said. The first one, Ter and I were with him

and his

> eyes were open the whole time but his legs buckled and he went

down on his

> knees next to the chair. When he stood up, he looked around the

room like he

> had now clue where he was. Then, he said " I fine " and went out

the door to

> school. I didn't know it was a seizure till I got into work and

asked around. I

> thought a seizure was someone laying on the floor, their eyes

rolled back,

> and frothing!!! I was told to get him to the doctors and he

ordered the EEG.

> This one that he had last Wed was at school. They thought he just

wasn't

> paying attention because he just stared straight ahead, but when

they tried to

> get his attention " there was no one there " . They kept asking him

to respond,

> he finally snapped out of it for a split second and tried to stand

up.

> Then, he fell on his knees, but immediately tried to get up

again. Fortunately,

> they were right next to him by then because he stood up and went

straight

> back like a board. They called me and the school nurse

immediately. I went

> there (10 minutes away) and took him to the ER because the nurse

said that

> anything over 5 minutes needs to be checked out. At the ER, they

gave him 1000 mg

> of Depakote and he suffered from a headache till Sat....along with

> 'cracking' in his brain. All his blood work was normal. I have

learned that 'absence

> seizures' are the same as epileptic seizures. Seizures can be

found in DS,

> autistic , and UCTD (Undifferentiated Connective Tissue

Disease....an

> autoimmune disease). It's scary.........my heart goes out to

other parents whose

> kids suffer from them.

> Take care, Everyone.

> Margaret

>

>

>

>

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