Re: seizure questions

October 7, 2004

In a message dated 10/7/2004 9:05:44 AM Eastern Daylight Time,

brenny01@... writes:

> Hi bren had his first seizure yesterday-11 1/2 years old.

> No other helth problems or meds-no heart-nothing--it happened at

> school and all the blood work, cat scan and x-rays were ok-we go

> today to pedi and more tests-mri-eeg to come.

> How common is this-

I don't have any first hand knowledge, but I think it is more common in kids

with DS. You mentioned changing hormones being a trigger and that reminded me

of a woman I used to work with. She had her first seizure at the start of

menopause and they told her any change in hormones can trigger the onset.

This must have been scary for your whole family. I hope you're all feeling

better soon.

Kathy, Liam's mom( 6)

October 7, 2004

Sorry, don't have anything really useful nor insightful to offer. But you

may want to review Dr. Leshin's essay on Down syndrome and epilepsy,

http://www.ds-health.com/epilepsy.htm

, if you haven't already.

Whatever is going on (wouldn't it be nice if it were just a one time, one

off, fluke) sounds like Bren has a great sister. -- Bob, Charlie's dad

October 7, 2004

Your story touched my heart. Glad Bren is okay. Please keep us posted on how

he is doing. Hopefully it's a once and done deal. How scary. He is lucky to

have such a loving sister as well. Try to relax tonight!

Jackie, Mom to 16ds, 14, and Bradley 10

-------------- Original message --------------

>

> Hi bren had his first seizure yesterday-11 1/2 years old.

> No other helth problems or meds-no heart-nothing--it happened at

> school and all the blood work, cat scan and x-rays were ok-we go

> today to pedi and more tests-mri-eeg to come.

> How common is this- the er Dr. tried to give me some answers but

> mostly-just don't know why or if it will happen again.

>

> He said this can happen as they age-hormones- he was in front of the

> computer but that is nothing new-and he loves his x-box. he does wear

> glasses. he never had a febrile seizure-his body is changing-no waist

> and short legs-love going clothes shopping now! all of a sudden it

> seems his body changed. last few months.

>

> any thoughts would be very helpful-I am trying to process all this

> and not get too far ahead-when do I send him back to school? he has a

> riding lesson tomorrow-my Dr can answer this today but you guys know.

>

> Bren seems totally fine now-he's playing-eating-he even took a tub

> today -willingly-let me cut his nails-no fight-not even the toes!

> And -he brushed his own teeth-toothpaste and everything!!!

>

> Remember what your mother said-always wear clean underwear in case of

> an emergency thank goodness the school year is early and the

> socks and undies are still white-haha I have to laugh or I will

> cry again

>

> But this leads to another topic-his sister who is 11 months younger

> than him was just happening to be walking in the hall to lunch when

> she saw the emt's and Bren on the stretcher! she lost it and the

> teachers tried to console her. She waited with them outside for me to

> meet the ambulance. She stayed the rest of the day at school then my

> husband picked her up and she stayed at the hospital with us--the

> bond is just awesome-he was in trouble and she wiped his eyes, nose

> was so worried for him to stay overnight- " Mom-you can't let him stay

> here alone " She didn't know I would stay. She wanted to stay too. She

> laid on the bed with him and they watched a bit of a movie. She

> helped him with his shoes and they were hugging each other. We know

> our kids are special and love everyone but it really hit my heart

> that she LOVES him-all his limitations and the waiting my other kids

> have to do-the extra therapy people in the house and disruptions- She

> loves him- long post but thank you

>

> Click reply to all for messages to go to the list. Just hit reply for messages

> to go to the sender of the message.

>

October 7, 2004

had his first seizure at age 7 (Sunday makes 4 years). He had his

second seizure shortly after that and a third on Thanksgiving of 2000. He

has since had a couple dozen - some he losses consciousness and others he is

fully awake and it only lasts a few seconds. He's on carbartrol twice daily

for the seizures (it gets bumped up when he continues to have seizures).

also experiences paralysis sometimes after his seizure - it doesn't

last too long, but it's scary.

I was told that it's uncommon for kids with DS to start seizures - mostly it

will occur in infancy and adulthood - but I've heard of many children

starting them in chilhood years. We still don't have all the answers and

never will when it comes to 's seizures. We suspect he has more b/c

he often gets frightened and holds his right arm. He did that during an

EEG, but the neurologist said it could come from a very deep part of the

brain that the EEG would not pick up.

Yes, send him back to school. Most doctors don't want to start antiseizure

meds unless a person has had a second seizure. We have a seizure plan on

file with the school and Kathy (b4alltoday) gave me a seizure checklist for

the school to keep on hand. has only had one seizure at school and

that was this summer. The school didn't call us - rather a friend of ours

happened to be there and did. When we called the school, they said he

didn't have a seizure, only tremors. DUH!!! will not be attending

the school's one month summer program again (he also was exposed to chicken

pox and they didn't tell us).

Anyway, here at our house, when does have a seizure, the first thing

we do is check the time (to time the seizure). Someone grabs a towel to put

under him and someone else lays down with him. We keep him on his side,

just in case he gets sick.

seizure questions