Hi from Jac's mum - fetal valproate

[Jac's mum]

Hi everyone,

I'm new to the site. I became a grand mal epileptic in my teens and after several unsuccessful years of trying medications, was put on a combination of Carbamazapine (tegretol) and Sodium Valproate(epilim). The combination of these two drugs offered a high level of stability for me.

I have two children, a 17 yr old boy - perfectly healthy and a 10 year old girl who has tragically been affected by Sodium Valproate. She has Fetal Valproate Syndrome. We sought pre-pregnancy counselling several times over the years and no-one told us that this syndrome was out there. We were warned that there was a slight increased risk of spina bifida but if I took massive doses of folic acid it should hopefully act as a safeguard.

At the 22 week scan it was revealed at that our baby had spina bifida but that wasn't the worst of it. When she was born the specialists after 9 weeks, informed us that she had Fetal Valproate Syndrome as well. We had never heard of it before and it seemed here in Australia the doctors hadn't dealt with very much either, hence the delay in telling us about it. At this point it was revealed to us that our daughter's principle condition was in fact the Syndrome and the Spina Bifida is part and parcel of it.

Jacqueline is now 10, although she walks, she does have mobility issues. She is also incontinent both bowel and bladder but the most crushing blow of all is that she is intellectually impaired and will always be dependent on someone to help her do the simplest things. Her condition requires so much physical caring from myself and it is very tiring and often leaves me feeling very dispirited. This in itself can be very taxing with own health issues.

It devastated my husband and myself. On a personal level, I can't tell you how totally responsible I felt for all of my daughter's problems, everytime anyone would ask, "Why is she like that?" It was like a knife through my heart.

It is beyond tragic that a drug can be given to women in child bearing age that has effects more far reaching than thalydamide and no one as yet has been called to task over it. However, it seems that in the UK a class action suit is being mounted, these things take years though for anything to eventuate.

All I can say to anyone out there who may read this, if you are on Valproate and considering having children, please for the sake of your unborn child, seek the advice and guidance of your neurologist for an alternative medication that is less toxic.

I only meant to say a little hello, but these are things I never say out loud, I just keep them bottled up, I hope I haven't put anyone to sleep.

Jac's mum

[Meetz1064]

to CWE, Jac's mum!

I'm sooooo sorry for what you've gone thru with your daughter and the Fetal Valproate Syndrome. I wish there were something that I could do to help you from here. The best that I can offer you is my ear though.

Feel free to come and vent anytime, we'll be here for ya.

Take care,

Meetz

[BuckeyeFan]

I am pretty new here as well. Let me assure you that you have found a great haven with these friends here. I have found this site to be a true blessing.

Welcome and I will say an extra prayer for you and your family.

[Bernard]

Hi J'sM, welcome to the forum.

{{{Jacqueline & Mom}}}

Thank you for sharing your story. I'm sure it must be difficult to write/talk about.

Stacy (my wife) was on epilim/sodium valproate when pregnant with our second child and having tonic clonic seizures once a week or so in spite of it. Fortunately, #2 is healthy, bright and normal (aside from far sightedness and eczema).

Unfortunately, there really isn't any anti-epileptic drug that doesn't carry increased risks of birth defects. It's just another reason to explore EEG neurofeedback, CBT and "seizure control" diets IMO.

[RobinN]

Welcome... I too was touched by your story.
I am glad that you joined the group. I am sure you can share an answer many questions regarding this drug, and others like it. We have had a few members question the use of drugs during pregnancy.

My daughter is 16 and has been having seizures for 1.5 yrs. We have not found a med that is effective or she can tolerate. So we are going the nutritional route at the moment.

[Birdbomb]

Welcome Jac's mum

Make yourself at home. There are many helpful and supportive folks here. Thank you for sharing your child's history. You are a strong and very brave woman to take on such a monumental task. Do you have any family and friends for support? You have to take time for yourself and you husband when having to deal with raising you daughter.

[skillefer]

Hi Jac's Mum! Welcome to the forum. There are lots of really nice people here, so feel free to vent when needed. I'm sorry to hear about the special needs of your child. And it is frustrating that the meds we need to control our seizures are so toxic. You'd think that with all the money the drug companies are making, they could come up with meds that are safe to be on when pregnant. Anyway, welcome to the group. *hug*

[brain]

Jac's Mum

Welcome to CWE and feel free to
vent here and ((((((( hugs )))))))
and


You'll find plenty of folks in the same
shoes and in the same boat as you are!
Browse around and make yourself a home
and thanks for sharing us your story!
Will keep everyone in my thoughts and
prayers!