children with seizures - support group

amother

Sun, Mar 27 2011, 10:35 am

This is more like a vent to me. Even if I know I'm not the only one going through this, I feel so alone cause I don't know anyone in this situation, and don't have whom to talk to. So I'm hoping to get some chizuk here. Sad

My story starts over 5 yrs ago.
My son was 3 months old, one day, out of the blue, he had a siezure. I went to the hospital, they thought I don't know what I'm talking about because he looked fine. Till he had a seizure in the ER. Looooong story short: I was in the hospital for a week, where he had a siezure every few minutes (too many to count) they stabilized him, took all kinds of tests you can think of, And put him on meds. when ds was almost 3 (long story of its own, couldn't find a dr. He wasn't under a drs. Watch for a long time, stopping the meds, he had another seizure, going back on meds.....) ,he was b"h taken off meds, as he hasn't had a seizure since, and the meds hasn't increased in 2 yrs. B"H, B"H he's medication free for 3 years. And doing great.

I would've liked to finish my story here! But while all that was going on, I misscarried, had a D and C. Wasn't easy.

B"H after ds was off meds, I had a beautiful baby girl, and of course I was very nervous she shouldn't give me the same hardships. And you all understand my fear when in her sleep her legs would jerk, I knew it wasn't a seizure, but it made me nervous, I asked the dr. She said its a normal thing, babies do it sometimes.

Then 2 yrs later, another beautiful baby girl. I was on the watch again. (This isn't a thing a person gets over quickly) the age, that my son had it, passed uneventfully. And I breathed a sigh of relief. Or so I thought.....

My baby was 9.5 months old and starting to get up all over. I was sitting on a bed, she was standing on the floor, fell, and fainted, so I thought...... Then she started shaking. We went to the hospital (ill leave out all the details) then we figured out that she didn't have a seizure "because" she fell, but she fell "because" she had a seizure. So now I have a 1 year old baby on meds, she still had seizures so we had to increase the dose twice. And this friday, she had 3 major seizures, and had to increase the meds yet again. Sad

Its so hard to just look at this baby, while shaking, turning slightly purple, klentching herself, and there's nothing you can do, but keep her away so the other kids don't see it, and watch, till it passes. Sad

I'm constantly scared I might not see her have one, and she'll fall somewhere and hurt herself. Or of other people seeing it. I'm sooo scared. I keep davening that it should all blow over like my son. As they don't see anything wrong in all the tests they took.
Is there anyone else going through something like this?
Can we all support each other?

I'd like to stay anon (as I know too many people here)
Ill sign,
Glen

amother

Tue, Mar 29 2011, 9:44 am

Dear OP,
Reading your post brought tears to my eyes and memories. My story differs somewhat from yours but the pain is very much the same. One day, when my ds #2 was 4 years old, we were standing in the kitchen making pizza dough. He loves to help me in the kitchen and it was such a happy time. My ds #1, 6 at the time was with us as well. My ds # 2 was standing on a stool and all of a sudden he weaved and fell backward on our tile floor. It was as if I was watching things in slow motion and was powerless to catch him. He fell to the floor, banged his head and started seizing. I'd never witnessed a seizure before and it was horrendous. It went on a minute, but felt like an eternity. My dh was outside talking to a friend. I ran and started banging on the window to alert him. But the most heartbreaking was that my ds#1 was watching all of this and was literally paralyzed with fear. I scooped my ds in my arms and ran to the car, didnt call Hatzola as we live very close to a hospital and would have gotten there faster. I ran into the ER cradling him in my arms, didnt even think to put on shoes... They didnt find anything. He was postictal for a while and then eventually they sent us home. We saw an epileptologist who told us to watch and wait. It wasnt clear if it was because of fall or he fell due to seizure. about 6 months later he had 3 seizures about a week apart. All grand mal and all in very public places, supermarket, school... He was started on medicines, but has had breakthrough seizures for about a year, constantly increasing meds... Most recently had another EEG and we're told that his seizures have progressed and he is having more activity.
He is such a beautiful boy and a beautiful neshama and every time I think about it my heart just breaks. What will the future hold for him? will he get better? I just daven to hashem to keep my little one safe. Even little things like sending him to day-camp are a big deal as a lot of places dont want to take him and have the added responsibility. what will happen when he is older, for ex, will he be able to drive? the kid loves cars. He is now close to 6 and we still have not gained full control of this.

Also, can't talk to a lot of people about this except my family, but they have no experience and can only offer sympathy. I told a few friends, and one called me back and although she didnt mean to, really hurt me. She told me that I shouldn't talk to anyone about it because I should think about my ds future and shidduchim. Oy, I do, like you, feel alone... Hugs to you OP, Hug

. EYH your daughter will grow out of it as your older ds and this will just be a blip in your life.

amother

Tue, Mar 29 2011, 10:15 am

My dd's story was very different, in that she was 9 years old when it started. At the time we didn't know what we were dealing with, only that she had been having what seemed like petit-mal/absence seizures for a while. (I was the only one who noticed them - she would start staring into space and bobbing her head for a few seconds at a time.) Since these minor absence seizures were picked up on an EEG, we agreed to treat her with meds.

Hindsight is 20/20. But going through this, it was very scary. Within a few days of starting meds, dd started having full blown grand mal seizures. In the ER, everything looked fine. I was told it was a good thing she was already being medicated, and of course, we should increase the meds. Every time her meds were increased, she would start seizing again. Then they added a second med that seemed to control it better, but we were still seeing breakthrough seizures, though not as bad. It was extremely scary watching dd go through this, at a point in her life that she was very social, very popular, doing well all around, etc. I was terrified of anything happening in school, or around her friends, that might cause kids to act anything less than nice.

At the time, I didn't know anyone with seizures. I spoke to a local PA and Hatzolah member about it, and he kept brushing aside my concerns saying "so, you have a kid with seizures. Lots of people do. Don't worry about it. You'll get used to it, and she'll be fine..." That did nothing to reassure me. I was a nervous wreck.

When I told a friend about it, because I knew her son with CP had (tons of) seizures, she said her son had tried the same meds, but seemed to "have a reaction that caused him to have more seizures". Seems dd had the same. She continued having minor breakthrough seizures until we got her off the first medication. (I'm not naming the meds right now, because what works for one may not work for another.)

I know our situation is entirely different than yours, but I can encourage you to be alert to everything going on. Sometimes it's not possible to find a cause. But other times you might notice that certain things act as triggers. With my dd is was lack of sleep. I let her stay up late the night before her EEG - boy did we get results! For others it might be certain foods or other environmental factors. If you're not seeing satisfactory results, ask questions. There aren't a whole lot of medications, but there are a few choices, so it's important to make sure whatever you're using is working. The key is to get them under control, and keep the seizures at bay as much as possible. That way, your child has the best chance of outgrowing them.

B"H we have good news. After 2 years of being seizure-free on medication, we did a Video EEG, and B"H the results were wonderful. B"H I now have a seizure-free and medication-free 12 year old.

Wishing you the same, and loads of nachas.

I'm posting anonymously, because we kept this quiet. But if you feel the need to contact me, I'll think of a way to let you get in touch with me.