Sodium Valproate, this is just another everyday story, of one of the ignored Children that
David Cameron’s Government choose to ignore!
I have Epilepsy it’s not my fault!
I sort medical advised after having only a few fits in my lifetime, it was recommend to continue to take Sodium Valproate in 3 slow release doses, 1200 mg per day, as my Neurologist advised me, there was only a 1% chance of having a baby with Spina Bifida, according to the notes that I have recently seen in my medical records!
Just take a higher dose folic acid and you’ll have lesser risk.
Back in late December 1998 when I had this advise from a Neurologist, the Welsh Government confirmed that the directive on prescribing Sodium Valproate, to women who were think of have children were as follows:-
“I note your concerns around the prescribing of Sodium Valproate and its effect on the unborn child. Officials have obtained a copy of the Summary of Product Characteristics (SPC) for Sodium Valproate published in 1997, the period around which you have a particular interest. The entry from Comapny XXXX(For Legal purposes I will not name the company or the brand name), the manufacturers of Sodium Valproate at the time, gives the following advice for prescribers:
“In women of child bearing age, Sodium Valproate should be used only in severe cases or in those resistant to other treatment.”
The SPC goes on to advise:
“Women of child bearing age should be informed of the risks and benefits of continuing anti-epileptic treatment throughout pregnancy.”
This demonstrates there was an awareness of safety concerns at the time but, as you identify, there was also a need to make sure this information was conveyed to the women receiving Sodium Valproate.
Medicines licensing for the UK is a non-devolved matter, and is the responsibility of the Medicines and Healthcare Products Regulatory Agency (MHRA). Further information on the work of the MHRA can be obtained from the following link: http://www.mhra.gov.uk/#page=DynamicListMedicines “
So I have Epilepsy, my husband is disabled with a chronic disease, that isn’t life threatening but means that some days he struggles to walk, our son Tom is currently 14 and really not coping well, as a teen socially in mainstream school, being pushed around and bullied on a daily basis because people don’t understand Autism Spectrum Disorder. He’s diagnosed as Aspergers as well as all the Global affects, from his diagnosis of Fetal Valproate Neurodevelopmental Effects, form the Sodium Valproate I took when I was pregnant with Tom.
David Cameron, says we all have to go out to work, I have done this all my working life, with Epilepsy my, Disabled Husband and our Son Tom, he is currently waiting on an operation for his ears because one of the effects of the drug is that our Children’s ears have Narrow Eustachian tubes and Impaired Eustachian tube function, Tom now needs a Cholesteatoma removed. The charity that I am a Chairperson of attended Parliament on the 18th of June, Alec Shelbrooke MP, Chair of the APPG Thalidomide and other harmful drugs prescribed during pregnancy, has added Sodium Valproate birth defects to the APPG. The purpose of this meeting was to formulate a workable strategy to raise awareness of Fetal Anti-Convulsant Syndrome (FACS), I ask the question “What are you going to do about the finding the 20,000 Children that have been affected by FACS” the reply was on the line of nothing because we are just here to discuss how to make people aware of it for the future to prevent it.
Now one of the outcomes of the present governments way of thinking is the 20,000 plus children effected by Sodium Valproate, will be picked up by all the current services (DSS, Health Authorities, SEN, Housing and DLA) in place for our Children.
- Schools do not ensure that the social welfare and educational needs of our Children are fulfilled to the maximum
- NHS ignores our symptoms of Fetal Valproate Syndrome, by putting our Children onto the bottom of waiting lists when urgent operations are required, example my own son
- It is very difficult for our Children to get an official Diagnosis of Fetal Valproate Syndrome because of Doctors fear of reprisalI am also the Interim Chairperson of the charity called Organisation for Anti-Convulsant Syndrome (OACS) http://www.oacscharity.org there are over 500 members just like me who have taken Sodium Valproate, or one of the other 26 Epilepsy Drugs, that there’s available to women, 20,000 plus is just the 1 drug Sodium Valproate, we are just scratching the surface with all of this and this drug has been on the market for 43 years.In the 43 years that Sodium Valproate has been on the Market there have been 8 Prime Ministers, David Cameron withdrew the legal aid stopping the families battle against the drug company responsible for this drug, he is also part of the current government choosing to ignore the huge bill of £30,000,000,000 (30 Billion) plus costing the UK today just to look after the 20,000 plus forgotten Children of just 1 Drug Sodium Valproate!
The EMA now says:-
“PRAC recommends strengthening the restrictions on the use of valproate in women and girls
Women to be better informed of the risks of valproate use during pregnancy”
DO YOU REQUIRE ADDITIONAL SUPPORT?
Health, Education, Social Care, Community Groups or Just a Chat
PLEASE EMAIL US NOW WITH YOUR REQUIREMENTS TO
For more information about Fetal Anti Convulsant Syndrome you can contact us between
12pm – 3pm Monday – Friday
Tel:0208 3869271 Mob:07833 563778
6pm – 8pm Monday-Friday
Call:- Jo Cozens
Outside of these times you, can email a call back request to firstname.lastname@example.org
Also please visit our Facebook Support Page
Organisation for Anti Convulsant Syndromes
23, Morriston Close,
South Oxhey, Watford, WD19 6UB.
For O.A.C.S Republic of Ireland
O.A.C.S Liaison Officer for Ireland:- Karen Keely Walsh
Contact us for caring and understanding support.
REMEMBER! We’ve experienced this too!