Epilepsy is So Much More Than Seizures 2020

#MoreThanSeizures

 The Testimony of Theresa Byrne

 

 

“I was first prescribed Epilim (Sodium Valproate) in 1986 for generalised epilepsy.  At that point, I did not know about the impact it would have on my life, which would be far #MoreThanSeizures.

Throughout both my pregnancies, I would continue to take Epilim – unaware of what I now know today.

When both of my children were born, they were full-term but so tiny, underweight and such bad feeders that they were kept in the neonatal ward. They simply were not what I imagined a healthy baby should look like.

My first born was difficult to rear and feed. He attended mainstream school but in hindsight,he struggled enormously. He was never afforded any assistance during his formative years.

My second child had more obvious difficulties.She was nearly 2 and a half years old before she walked; she had learning disabilities; dyspraxia; urinary incontinence; sensory issues; and had no filter on what she would say.This made forming friendships and so much more extremely difficult for her.  Many referrals & consultations yielded no answers as to why my daughter had these difficulties.

To this day, my daughter needs full-time care and attention.  She currently attends a day service which provides a level of routine and teaches life skills such as how to use computers, using public transport amongst other day to day skills that she needs.

I could not class her as an equal with her peers. She has a poor degree of public awareness and this worries me greatly.Because of her disability, my daughter has very few friends and little independence.”She relies on me”.

Unfortunately, when you have no concept of what you are specifically dealing with, you have no choice but to battle down and get on with it. You are a mother and that is your job. You do not know any different.

However, I always trusted my gut instinct which told me that it was nothing that I specifically did to cause these catastrophic damages and robbed my children of the chance of having a normal life.  Deep down, I knew there was an outside element.

That outside element turned out to be the epilepsy medication I had been prescribed – Epilim.  I now know Epilim increases the risk of harmful effects in pregnancy and can lead to Fetal Anti-Convulsant Syndrome (FACS) – this can cause physical and developmental disabilities in the children who are born. Today I know both my children have been impacted by Sodium Valproate (Epilim).

From a mother’s point of view, I see girls of my daughter’s age in groups having a giggle; out shopping together; using trains and buses; and not a mother in sight.

I had to give up full-time employment to care for my daughter as she needed special care and attention which a mainstream childcare facility could not provide.Everything that my daughter has achieved has been a huge struggle for her and that makes me so angry.  Especially now that I know why this happened.

In 2018, then Chairperson of the Oireachtas Health Committee, Dr. Michael Harty noted in the Committee’s report on Foetal Anti-Convulant Syndrome: ‘It is noted that individuals with FACS are not affected by chance, but by the failure to adequately inform and counsel women who were prescribed valproate medicines.’

I now know that evidence was emerging from the 1960s of the impacts Epilim could have in pregnancy – yet, it continued to be widely prescribed to women with epilepsy in pregnancy for decades to come; without appropriate warnings or discussions on what may happen.

As part of OACS Ireland – the dedicated organisation set up to support families impacted by FACS – we have campaigned and achieved so much in relation to necessary precautions and guidelines regarding the prescribing of Sodium Valproate but there is so much more to do.

My family and the families of all others wrongly impacted by this, need support and answers as to why this situation was allowed to happen for so long. We will continue our campaign until we achieve our goals.

Epilepsy for me, and for many other families impacted by FACS, is so much #MoreThanSeizures. It is the anger we feel when we look into the eyes of our sons & daughters and think of the people, they might have been had we known what we know today.

OACS Ireland, would like to thank our colleagues in Epilepsy Ireland for not only spreading awareness of epilepsy, but also, continuing to assist OACS Ireland in the public campaign for justice of families impacted by Epilim (Sodium Valproate).

 

Stay Safe

OACS Ireland

 

2 Comments

  1. Adrienne Pettigrew on May 22, 2020 at 2:49 pm

    How painful it is for all of us….but even getting a propper diagnoises of FCS is so hard…we need supports for our familys.!! Stand strong + stand together !!



  2. Paddy Byrne on June 3, 2020 at 4:27 am

    My wife suffers from Parkinsonism as a direct result of being overpriscribed epilum. What a horrible disease because of medical stupidity.