Infant w/Seizures - Long Term Prognosis

[jgunder]

My beautiful daughter, born in August of 2005, started having seizures in January of 2006 , (the night of her first DTP vaccination).

Since then my life has been one consumed mostly by dread and fear. She suffers from multiple myoclonic seizures a day, and several large GM seizures a month. Last week she had 2 GM seizures and was in the ICU for 5 days.

Since her seizures are so violent and prevent her from breathing, every day is an exercise in despair. Like a timebomb on a random timer we never know when she is going to go off. And when she goes off, we never know if she'll come back. One time she went a full month without a GM, and just as the oppressive anxiety started to lift, she went into a chain GM seizure episode. Her Diastat isn't really working anymore, though we have an increased dose now.

My wife and I believe she has SMEI, (Dravet syndrome), her neuro does not believe that is the case. Her neuro believes her condition is benign, but has her on a ton of drugs. It is hard for me to believe that this is all benign, especially considering one of the main features of SMEI is that other than the seizures, development seems normal until age 3.

One of the things that saddens me most these days is the fear that my daughter's quality of life will never improve. I am wondering, is there any chance of an infant outgrowing a profound multiple seizure disorder?

http://fmellish.shackspace.com/aquarium/images/04222006_003.jpg

Thank you,
Josh

[LIZARD]

((((((((((((Josh))))))))))))))). :(

I'm so sorry you're having to deal with your little one having such severe and frequent seizures. How terrifying it must be for a parent. I'm the one with E in my house, and although it's well-controlled now, I am very respectful of what my parents and husband have felt when they witnessed them.

I wish I had some words of wisdom for you. I am not--nor are any of us, as far as I know--a medical professional, but from what I have seen and read, the more severe the sz disorder, especially when it starts early in life, the harder it is to achieve good control. I was also an infant when I had my first sz--a grand mal--but I have been very fortunate that they have been relatively brief, uncomplicated, and few in number (just over 20 in 39 1/2 years).

I don't think it's impossible to get them controlled better they are, and I hope some of the parents here can assist you with recommendations of who to see and treatments to ask about. You might also try the Child Neurology board here, as I know that many of them have kids who have dealt with serious seizure disorders.

Good luck and God bless,

LIZARD :)

[jgunder]

THank you Liz, I will also post this in the child neuro forum.

Josh

[LIZARD]

You're very welcome. :)



Good luck...

LIZARD :)

[pam]

Hi Josh..
Have you considered the possibility of your daughters seizures being caused by a vaccine injury ?

I would at least address this with your pediatrician since she had her first seizure so soon after the DTP. There are forms you need to fill out to report a reaction this severe. I believe there is a parent on Child Neuro who has dealt with this.

I hope you can find a med that will control her sz. I looked at her pic, she is a beautiful little girl !

Take care,
Pam

[jgunder]

Hi Josh..
Have you considered the possibility of your daughters seizures being caused by a vaccine injury ?

I would at least address this with your pediatrician since she had her first seizure so soon after the DTP. There are forms you need to fill out to report a reaction this severe. I believe there is a parent on Child Neuro who has dealt with this.

I hope you can find a med that will control her sz. I looked at her pic, she is a beautiful little girl !

Take care,
Pam

Pam, this was the first thing we considered. At onset all the Dr's said it was a febrile seizure from the fever caused by the vaccination. Of course that was back in January when she had her first seizure. Now she has them frequently.

My wife and I debate this issue from time to time. SHe is convinced it was teh vaccine, I am not so sure. Sarah had some weird issues before ever getting vaccinated. She would lose the use of her left arm sometimes, she would not respond to sounds, she acted weird. She would experience shallow breathing on occassion, and invitro she was suspected of having Trisomy since mommy's Alpha Feta Protein screen came back weird.

So Sarah has been expressing "indicators" of abnormality before she even arrived on the scene. I tend to think her weirdness before 5 months was really the beginning stages of her condition, and the vaccine just gave her enough of a fever to let her full condition express itself.

The other reason I have let go of the whole causation element, is because regardless of what the cause was, here we are today. It's not like if the cause was the vaccine then there's a cure. So i'm past playing the blame game with the government.

My wife on the other hand is still very adamant about consistently accusing the vaccine. I don't see the value anymore of trying to figure out the cause. In my opinion Sarah had issues from the beginning.

My wife mentioned a fund for people who have suffered loss as a result of a vaccine. If this is true, then I can pretend to think it's the vaccine long enough to get the money. God knows we need it. Even though we have insurance, all the copays for ambulance, ER, hospital, are expensive. Everytime Sarah goes off we have $500 to pay out.


Josh

[pam]

Josh,
I have read and re-read this post trying to think of something..anything to say that will help. The truth is.. I cant.
I have gone back and looked at the picture of Sarah and I just cannot imagine how much it must hurt as a parent to watch your child have seizures and not be able to fix it.

In my case I am the parent and my kids have had to see me have the seizures. It must be horrible for them like it is for you.

You are very right when you say that knowing whether or not the vaccine was the cause or not will not change the treatment. Some people do feel a strong need to have a reason, others dont. I admire your attitude. Your daughter is lucky to have you.

If you suspect your daughter has other issues hopefully she can be evaluated by genetics specialists (is that who deals with the trisomy stuff ?) and they can get on top of things early. I dont know where you are, but most states have early intervention programs that Sarah should be eligible for if you feel she is in danger of losing some of her skills.

I'm sorry you had to search out these forums, but I hope you find some support here.

Take care,
Pam

[bbbecki78]

My son is six months old and is diagnosed with infant epilepsy, unknown underlying cause. He had his four month immunizations on 12/20/07 and was life starred to the children's hospital that night due to a siezure, he turned blue and was not breathing. This was his first siezure ever. We initially thought it was due to his immunizations. He has since been hosptilaized several times and have had several trips to the ER. He is on Topomax and phenobarbitol but is still experiencing daily small seizures. He has had a normal MRI but stil abnormal EEG's. It has been tough.