children suffering from siezures - support group!

amother

Sat, Jan 22 2011, 11:52 pm

I don't know if I'm posting this in the right place, but let me start my story.....
When my second dc was 4 months old he suddenly had a siezure out of the blue. we were rushed to the hospital where he continued having siezures very often, bad violent ones, I was so lost and terrified, they took all types of tests, everything came back fine, I was in the hospital for close to a week, (don't ask what we went through there, each test taking forever.....) They put my son on meds, b"h he stopped having siezures. We continued using the dr that saw him in the hospital, till one day he decided to let us know that he officialy doesn't take my insurance, but because he saw my baby in the hospital he must continue seeing him, and now that our insurance wasn't paying him, he can't continue seeing my baby until he gets payment. So there I was lost again, without a dr. Not knowing where to turn (this was an extremely long story) we ended up finding a different great dr. Who accepted our insurance, by then my son was 2 already. B"h this dr. Saw that for 2 years his meds weren't increased (cause of weight and age) and I sometimes forgot to give it, that it looks like he can be weaned, and b"h he's off of meds for 3 years now, he's a 5.5 year old healthy active (VERY Rolling Eyes

) boy. Everythings fine with him.
Now!! My 4th dc 9 months old fell, I picked her up and saw she passed out (or so I thought) then she started siezing, I wasn't sure it was a siezure, cause of my experience it wasn't as bad as my sons, well into hospital #1 we went, they said they don't see anything, she looks fine, go home, if you see anything else come back (whew!!, almost missed my brothers sheva brachos) 2 hrs later at home. Suddenly she looked spaced out and not focusing so to hospital #2 we went! There they said they don't see anything, they can take a CT Scan but the risks with taking one is more than them seeing anything, so we made a lot of phone calls, and a CT Scan we took, b"h. They saw nothing (missed sheva brachos Crying

) we went home, everythings fine (or so we thought) comes next morning (friday), the "not focusing" incident happened again, so out we went to hospital #3. There they specialize more in children, took all kinds of tests, after hours of sitting in the emergency room, they admitted my baby, we spend shabbos in the hopital (missing shabbos sheva brachos Crying

) where they hooked her onto an EEG, put her on meds, and we went home monday! B"h she's doing fine, but she's still on meds.
Its very hard for me to think that I'm going to go through the same thing AGAIN!! Its so hard, noone should ever know. I still never got over the fears from the time my son went through it, every time a kid falls, every time it looks like somones rolling their eyes.....
I want to hear how other people are coping with this (as I've heard more and more people going through this)
Please join this "support group" let's help each other through this, and hopefully it'll make things easier for some of us

amother

Sun, Jan 23 2011, 12:01 am

OP my son had a different kind of seizure. He would get seizures if his fever got too high. So every time he hit 99.0 we would give him tylenol and motrin every three hours round the clock. Even with that I couldn't prevent all seizures and trust me it is so frightening every time he had one and I still will never forget his first one. But the doctor never sent us to the hospital and he was never on meds even though my dh begged the doctor to give us meds he always said that he doesn't believe in meds. B"h he hasn't had a seizure in a year now and I am hoping and hoping that this has passed. Now when my baby has fever I have such nightmares that he'll get it too that I don't sleep at all.

amother

Sun, Jan 23 2011, 12:15 am

Op here,
I understand you fully, although seizures from fever is different (its definitely scary) they wouldn't give meds for such things cause its "normal" for some kids to get when they have fever. Its definitely dangerous, that's why you have to work on keeping the fever down, but seizures from "nothing" is scary cause it doesn't stop, only on meds (doesn't stop as in every few hours she had another one) ( my son had every few minutes)
So my dr explained that most kids have seizures, we just don't know about it or see it, these are minor and not dangerous, there are some kids that get it more severely and need to be medicated till they outgrow it. So we're hoping it'll be fast!

amother

Sun, Jan 23 2011, 8:18 am

I had a student, age 8, who had seizures. This was a non-frum school, so his pictures are all over the school warning of the seizures. He is on meds, and even so, he had one during the day in grade two, and one at recess this year (grade 4). According to this mom, he usually gets them only at night, but I know he got a seizure twice in two years at school. This mom works full time, and I think she had parenting issues as well as his ADHD, but to give her a lot of credit, she raised him as a real independent soul and was not the least bit anxious about the seizures. From what I understood, the main thing is to time them and make sure they are less than five minutes. The seizures make the child extremely tired, so he needs to go home and sleep it out, but I did not see any other damage if it is under control.