My baby is having seizures

[askew]

I actually posted in a few other forums here about how my 6 mo old would not stop screaming lately. Two or three weeks of not being herself at all, and hours of inconsolable crying. Ped looked her over in the beginning and she was okay. I assumed teething, boy was I wrong. Turns out her brain waves had changed and a few nights ago she had her first Infantile Spasm seizure. Now she is having them several times a day. I am heartbroken.

We have to wait another day for her medication to get to us, we are trying Vigabatrin which has all these hoops you have to jump through to get it, as apparently 30% of people on it have permanent loss of peripheral vision. But it is the only drug that is approved for IS, so we are behind a rock and a hard place. She has had such a rough life. She had a prenatal stroke, has a brain injury, and has a chromosome disorder. All this aside, up until this point she was doing great and right on track developmentally. I am just beside myself. I pray that this medicine works for her, and doesn't have the side effects, and that the seizures don't do a bunch of damage.

[gsmom]

How scary. Huge hugs coming your way.

[KatWrangler]

mama. I don't know anything about seizures, but I am hear to listen to you. You can cry with me anytime.

Keep strong.

[hadleys_mom]

Couldn't read without sending a hug your way and tons of healthy vibes. I hope all of your questions find positive answers. Stay strong mama!

[anj_rn]

My DD started having seizures at 4 months of age after an anoxic brain injury. She is well controlled on her meds (Keppra). It was so scary to watch. We don't see seizures not unless she starts running a high fever.

((((Hugs)))) to you as you go through this.

[APToddlerMama]

I don't have experience with seizures but wanted to wish you the best. I hope the medication works well for her with no side effects.

[lilli'smom]

Originally Posted by askew

I actually posted in a few other forums here about how my 6 mo old would not stop screaming lately. Two or three weeks of not being herself at all, and hours of inconsolable crying. Ped looked her over in the beginning and she was okay. I assumed teething, boy was I wrong. Turns out her brain waves had changed and a few nights ago she had her first Infantile Spasm seizure. Now she is having them several times a day. I am heartbroken.

We have to wait another day for her medication to get to us, we are trying Vigabatrin which has all these hoops you have to jump through to get it, as apparently 30% of people on it have permanent loss of peripheral vision. But it is the only drug that is approved for IS, so we are behind a rock and a hard place. She has had such a rough life. She had a prenatal stroke, has a brain injury, and has a chromosome disorder. All this aside, up until this point she was doing great and right on track developmentally. I am just beside myself. I pray that this medicine works for her, and doesn't have the side effects, and that the seizures don't do a bunch of damage.

My oldest DD had infantile spasm. She had up to 10 a day along with Grand mal. It is so scary, I know. Have you discussed ACTH injections? Thats what DD was given and we were told that is/was the standard treatment for IS.

Hugs, Mama. Do your research and join IS support groups. My DD is almost 16 and doing great! She is still Epileptic and has some other neuro issues but is functioning quite normally.

[lilli'smom]

Does your DD have Tuberous Sclerosis? It seems that Vigabatrin is only approved to treat IS if TS is the cause.

Here is a great link and when I can find my old online support groups, I will pass them on to you! http://www.ninds.nih.gov/disorders/i...tilespasms.htm

[Kailey's mom]

I'm

[sbgrace]

[Lindsay1234]

[askew]

Originally Posted by lilli'smom

Have you discussed ACTH injections? Thats what DD was given and we were told that is/was the standard treatment for IS.

This is not a good choice for my DD as she has immune issues and steroids are immune suppressing. Thanks for your story, it absolutely gives me hope.

[askew]

Originally Posted by lilli'smom

Does your DD have Tuberous Sclerosis? It seems that Vigabatrin is only approved to treat IS if TS is the cause.

Here is a great link and when I can find my old online support groups, I will pass them on to you! http://www.ninds.nih.gov/disorders/i...tilespasms.htm

No, no TS. It was approved in the US for all IS last summer. You just have to sign a lot of waivers and all, but parents seems to think it is a wonder drug for IS.

[2boyzmama]

What is her chromosome difference? Is it a recognized/named syndrome? Do they know if this is connected? For example, my son's chromosome deletion is known to cause seizures, but the cause is almost always hypocalcemia, so seizure meds aren't necessary, but calcium supplements are (he's never had hypocalcemia or a seizure, though, we just know to be on the lookout for it).

I'm sure that this has all been considered already for your daughter, but I just thought I'd ask

[askew]

Originally Posted by 2boyzmama

What is her chromosome difference?

9P- She has a smaller deletion at the end of the short arm. Used to be called Alfi's syndrome. Now I think just 9p-. 50% of people on record with that deletion have epilepsy, but later onset and not Infantile Spasm. I don't think there is any connection between IS and her deletion. The Neuro and Epileptologist (sp?) are both sure it is from the brain injury. She had a stroke which caused something called PVL. I guess it is not uncommon in PVL to develop these seizures. They also kept stressing that the why was not important, that we just need to treat her and get them to stop as soon as possible. I was a broken record in the EEG room telling them "she was doing so well, how can this be happening?" They kept asking me to focus on treatment. In a nice way.

[bender]

Even if you have to use the medication, there is still a 70% chance of not losing the vision. Hugs and good luck!

[jondee0]

I'm sorry; I know how scary this can be. My son had IS, and I hated what it did to him, hated having to give him powerful meds, hated not knowing what his outcome would be. He does have a happy ending to his story---after being treated with Topamax, he became seizure-free and has remained that way for the past 9+ years (and has been off of Topamax for about 7). As an aside, he does have an underlying issue---Down syndrome---which made the IS a little more likely to occur than if he'd had typical chromosomes.

Again, I'm sorry you and your baby are having to deal with this. I hope that the med works well and quickly.

Joni and kids, incl. Michaela , 13, w/a funky spinal cord, and Gabe , 10, w/Down syn. and autism

[askew]

Well I can report that we have been on the meds for 36 hours and she has been 24 hours seizure free. Yesterday she only had one cluster all day as well. Some hope I suppose. Keep your fingers crossed for us!

[lilli'smom]

Originally Posted by askew

Well I can report that we have been on the meds for 36 hours and she has been 24 hours seizure free. Yesterday she only had one cluster all day as well. Some hope I suppose. Keep your fingers crossed for us!

That is wonderful to hear!

[BookGoddess]

Originally Posted by askew

Well I can report that we have been on the meds for 36 hours and she has been 24 hours seizure free. Yesterday she only had one cluster all day as well. Some hope I suppose. Keep your fingers crossed for us!

That's wonderful! I hope she continues to have more seizure free days.