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ohleigh

parents of young children with petit mal

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

To: ohleigh

Hi,

I just saw your posting about your daughter. My daughter is now 22, but was 9 years old when she was diagnosed with epilepsy. She has gran mal seizures. I was 47 when I was diagnosed with complex partial and simple partial (petit mal) seizures. Even though our experiences are somewhat different, I would love to talk to you anytime. You can e-mail me at txrhb1@aol.com

Blessings,
Barb

Petit mal

My nine-year-old daughter was just diagnosed with petit mal. We just started Depakote this week. Have been told that there is a 80-90% chance that she can grow out of it. Also there is a 30% chance that it might lead to a Grand mal. Depakote is supposed to prevent both types of seziures but can present a risk for birth defects as females get closer to the child-bearing years.

Depakote

My wife and I are facing this right now. She has been on Depakote since childhood and has had 100% prevention from seizures while on it with very few side effects. We are now looking at having children and are being forced to change meds. We were told that Depakote carries a 10% chance of a spinal deformation in pregnancies and are currently looking at other options. She started Topamax yesterday but there is not enough information on Topamax and pregancies to make us comfortable. Has anyone else heard anything about this?
Thanks

meds and pregnancy

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

Hi Patboy,

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

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

simmer down

Hey there solis :),

Sometimes in writing things can come across pretty harsh. Maybe you didnt mean to sound abrupt or slightly rude but it kinda came across that way. I wanted to let you know just so no one is offended now or in the future. Have a wonderful night :)

God Bless,

Jill

hi

My post was written with sarcasm not hostility. (Guess it doesn't translate well online)

Apologies if anyone was offended.

~sol

hey kdroot1 :) I am sorry

hey kdroot1 :)

I am sorry about what your daughter (and family) is going through right now. Is your little girl scared? How often does she have seizures? Did her neuro prescribe Depakote as the first measure? I am asking because I have JME- juvenille myoclonic E and it is known that the best treatment for that is Depakote but my neuro told me that he was going to try the less "harsh" for lack of a better word meds before Depakote to see if any of those worked out. Check into some of the posts here and read up on meds used for the type of E that your daughter has to see if another one could be tried out first. I understand all the concern you have because of the risks involved with Dep. I was 15 when my neuro told me he wanted me to take Depakote and then told me about the birth defects as a possible side effect and even at that time I was like "oh heck no." People respond differently to taking medications so it is very understandable and normal that you are already thinking of this stuff. It is your daughter, it would be, in my opinion, weird if you were not concerned over what got put into her body to help out with this. I hope your family is feeling better and good and happy :) he he. Keep in touch and let me know how you guys are doing.

God Bless,

Jill

Re: parents of young children with petit mal

I just found this site. My daughter is 5 and she has Absence Seizures. She's had them since she was 3. It is so bizarre. She's not on any meds. The neurologist said not necessary at this time. I understand what you're going through with your daughter. I'd like to chat with you sometime. Take care.

Mchele B.

Hi everyone. I have a 5

Hi everyone. I have a 5 year old son. I didn't know what he had until I started researching on the internet. I often thought it was daydreaming but then sooner realized that he didn't snap out of it. I have three older children and we are always alert when we go outside, bc he can walk right into the street. Some kids would eat his lunch sometimes or take his juice. He was in his brothers class and he was fine because his brother would keep a eye on him. But when they changed his class I had to take him out. I went on Elixers.com a homeopathic website. I had a phone conversation with the consultant of the website. She was able to give me a combination of homeopathic medicines that decreased the seizures to about 10 a day. I thought that was not bad at all. I remember he was getting them every 3 seconds but not all day. No side effects. I know that he might not ever grow out of them. I just hope I can enrich his life enough bc there will be things he will not be able to do. Hope to chat with all of you. Take care.