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parents of young children with petit mal
Fri, 09/30/2005 - 18:21Topic: Family & Friends
My 10 year old daughter has just been diagnosed with petit mal. She's been on Zarontin for 1 week with increases each week for 3 weeks. I would love to chat with other parents in the same situation. I've got lots to talk about and would like to find some sort of support system.
Comments
Hi Patboy,
Submitted by mommy2kyra on Fri, 2005-11-04 - 14:53
There are risks with all AED's. How long has your wife been 100% controlled on Depakote? Has the doctor considered taking her off meds altogether, to see if she does have a seizure? Some people do "outgrow" their seizures, and that may be the case for your wife. If her seizures aren't severe, maybe you could try to stop taking meds for at least the first trimester, when the chance for birth defects is greatest.
If seizures are still a concern, however, I wouldn't worry too much about meds. I've had 2 healthy baby girls on phenobarbital (and I nursed both), many others here have had healthy, successful pregnancies while on an AED. I won't say that I didn't worry while pregnant..I certainly did! I couldn't risk being off meds. But I never heard anything but positive outcomes from everyone, so we decided to go for it. It is a hard decision to make, but "normal" population carries a chance of 1-2% of birth defects. With an epileptic, the chances are doubled to 2-4%. Still pretty darn low!
Best of luck to you both!
Heather :)
you asked
Submitted by solis on Fri, 2005-11-04 - 14:15
Hi
The derogatory, descriminatory terms 'grand mal' ("large sickness" = 'tonic clonic seizures') and petite ("small sickness" ='absence seizures') have gone out the window, so I'd ask that you please get them out of your vocabulary.
(If the specialist you are going to still uses those terms I'd question his ability at keeping up with medical news)
Now, to your question.
I've had this since I was 3 years old and, guess what, I was also told I'd "likely outgrow it".
I didn't!
Imagine how devastated I was when things didn't turn out as hoped.
Don't focus on that possibility as it may NOT materialize.
Accept your daughter exactly as she is.
IMO that 90% stat is too high also ...75% is more like it.
http://www.epilepsy.com/epilepsy/glossary.html
Going by your stat..30%..
The majority of those with 'absence seizures' (70%) DON't develop into 'tonic clonic; so why are you worring about remote possibilities?
9 years old is a long way from child bearing age, so concern about your daughter's ability to have kids on Depakote seems rather premature.
You are also assuming the depakote will work, which again is presumptious.
Wishing you and your daughter luck
~sol
meds and pregnancy
Submitted by Jill on Fri, 2005-11-04 - 13:57
Hey payboy3 :) What type of E does your wife have? Is it one that requires lifelong treatment? It seems so if her neuro is telling her to start another med after being seizure free for so long. I have read a lot about taking meds while pregnant and from everything I understand every AED out there carries some risk of birth defect. My neuro told me that any woman has a 2% chance of her baby being born with a birth defect, if you take an AED that increases the risk to between 5-6%. There are a ton of woman on this site that took AED's while pregnant and have reported wonderful results. Also, the risk of birth defect is highest in the first trimester so depending on what type of E your wife has she could talk to her neuro about going off her meds for the first 3 mos. if that is something you two want to consider. Another thing is that if her neuro or OBGYN hasnt already told her to do so she should be taking a folic acid supplement before she becomes pregnant as well as during her pregnancy. My neuro prescribed 4mg a day for me. I hope everything goes great for you guys :) God Bless, Jill