I Think My Child Has Been Harmed By My Epilepsy Medicines……..What Do I do Next?

Every day we get contacted by so many concerned parents querying have there epilepsy medicines harmed there children due to multiple symptoms the child is presenting with. It’s a hard question as no one would ever imagine a medicine you have been prescribed by your GP, and not be given any information about this medicine could harm your baby. But unfortunately it does happen and is still to this day happening….. on a huge scale.

It is hard to distinguish different symptoms particularly when a parent reaches out to Health Professionals.  The majority of parents, myself included have always deep down suspected symptoms for a long time.  As a mum (and dads too) coming to terms with the fact that this has happened is devastating and the guilt that engulfs you is huge, and for a long time will stay with you. It did for me a long time but as we tell all our women who come to us, this is NOT your fault. If you were not given the information about the risk to baby during pregnancy, and the medication was prescribed from your GP, how can you make that informed choice about your pregnancy and baby??After all we trust our Drs/ Clinicians, they are the ones that have studied medicine???

Many mums will simply not admit that this is happening and be in denial about it for a long time (something I was) However the older the child gets and the more symptoms are presenting it does unfortunately come to a point where mum needs help but most importantly the child needs help and support.

I had 4 children under the age of 5 all with different symptoms and could not understand how this had happened. There was times I thought I was imagining it. At that point I was desperate for help, advice, support so was welcoming to any information possible I could get my hands on. Which the majority of parents we find when they approach us, are so relieved to have found parents who are in their situation. They can relate to what they are going through.

Diagnosis of FACS can be diagnosed at birth although this is rare and is predominantly based on Facial Dysmorphic Features or other more serious conditions such as heart/ kidney defects etc. When a child is aged between 0-4 and are showing symptoms along the Autistic Spectrum, delayed development, families have always been dismissed (myself included)with quotes from Health Professionals being

“Its the terrible twos, they will grow out of it”

“Your being very paranoid”

“Its just a phase, your being a very overprotective mum”

No parent knows their child better than them…. the parent.  Always follow your gut instinct.

The first port of call is your GP.  An appointment needs to be made to see your GP to discuss your concerns with the hope of a referral to a Geneticist (who diagnoses FACS) Show them some factual evidence, whether it being the PILS box (that states defect risk) of if we have sent you our information packs, they are perfect.  This demonstrates to the GP that you have done your homework and you do know what you are talking about.  Hopefully your GP will refer you although we have been told that GPs are being very reluctant to refer.  Over time we have found many parents have been dismissed by their GP, but you have to be a bit pushy and demand your child is referred. It is only a Geneticist who can diagnose FACS so it is vital you get a referral

 

Once you have got your appointment with a Geneticist, they will:

 Go through your full family tree, it is useful to have information on parents, grandparents before you get to the clinic, or maybe bring a relative with you
 They will want to know of any hereditary illness in the family
 Medical examinations will be carried out
 Blood tests will be offered to rule out other genetic causes (Downs Syndrome, Fragile X Syndrome, Huntington’s Disease)
 Pictures will be taken of your child’s head, hands and feet
 The Drs opinion will be discussed with you
 A plan will then be made to either go back to clinic , further tests or referrals to other departments

 

We always advise parents to take old pictures of the child (from birth) ideally, or from when they were babies, Geneticists do want to see these pictures (due to facial features)

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