Children with Fetal Anti-Convulsant Syndrome

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No, there was no "official" diagnosis while she was living. It was only after her going home that it was mentioned as a "strong possibility". Like I said, this was early eighties, so not much was known or researched at that time. They liked to slap a label, in her case, cerebral palsy. She fascinated the students at West Virginia U. If I would have known then..., oh, well. Hope your day is filled with blessing and quiet joys. I try to find at least one thing to smile about each day. It helps a lot.
 
Hi Rhea,
I am so sorry for your loss.
I agree completely smiling each day does help a lot.
The memories, and pictures bring quiet joys.

Blessings my dear,
Aodan
 
I have 2 boys with Fetal Valproate Syndrome. Due to this I have become involved with 3 organisations supporting families affected by this. We are currently trying to link parents in different areas with other parents from the same area. If would be great if you could get in touch if you would like to get involved in this way. I am based in the uk but we are hoping to build support across the globe x
 
Fetal AntiConvulsant Syndrome

Hi I am a mum of four kids all who have been affected to varying degrees by my anti epileptic medication, the 2 youngest have a diagnosis of Fetal Anticonvulsant Syndrome. I help run 2 organisations supporting families affected by this condition, one is called OACS (Organisation for AntiConvulsant Syndrome and FACT . I have a facebook page called 'Fetal AntiConvulsant Trust'. We are trying to link families together for mutual support if you would like to register with us for that or for information please Private message me.
Although we are based in the uk we are touch with families across the globe.
 
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support is available to you from the UK

Your neurologist may not have known as research has only recently been published and accepted by FDA, MHRA (in UK). Pharma companies have only recently been updating the patient information leaflets. The case in the US regarding DEPAKOTE and in the UK regarding EPILIM has helped to get the research published and warnings issued.

Organisation for Anti Convulsant Syndrome and Fetal Anti Convulsant Trust are there to help and we have a FB page F.A.C.T
There have been changes to the 2 organisations this year and we hope to create and be a part of a global community.

Useful research to forward to your neurologist. Published by Dr Rebecca Bromley and Dr Gus Baker in the UK on 31/01/13. I'll post to the Epilepsy Nation FB page. We look forward to hearing from you.
 
Organisation for Anti Convulsant Syndrome and Fetal Anti Convulsant Trust are there to help and we have a FB page F.A.C.T
There have been changes to the 2 organisations this year and we hope to create and be a part of a global community.

Useful research to forward to your neurologist. Published by Dr Rebecca Bromley and Dr Gus Baker in the UK on 31/01/13. I'll post to the Epilepsy Nation FB page. We look forward to hearing from you.
 
FACS is caused by quite a few AEDs. DEPAKOTE, EPILIM, Sodium Valproate, Valproic Acid, PHENYTOIN, CARBAMAZEPINE. check out OACS website in uk for more details.
I got sterilised when my son was diagnosed with FACS because i thought it was unfair to bring another child into the world with the disabilities that he has.
Up to 40% of babies exposed to Sodium Valproate will have some form of birth defect.
 
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