As my 1st blog to be honest I dont no what Im doing. Im taking you on my adventure as me and my family deal with the effects of FACS SYNDROME. FACS is caused when an Epileptic mum to be is obviously taking her medication to control her seizures, being great for the mum but has a devcastating effect on the foetus. I had never heard of this condition until I was pregnant with my 4th child Erin. Being a nursery nurse and now a mum I always knew something wasnt right with my babies as they werent progressing the way they should have been, werent reaching milestones . My mum had died very suddenly whilst I was pregnant with my 1st baby, she was 40 and died of breast cancer. This was a complete huge shock and to this day will never get over losing her. I was diagnosed with depression as my world crumbled. As the kiddies were getting bigger there was always something niggling at me. As Id been diagnosed with depression every1 was always telling me “Emma, uve got depression stop being paranoid the Kids are fine” I knew they werent. I was adament and banged on about this, causing many arguements with my fiance, family and friends. I got a call one day from my sister urging me to turn on Granada Reports. There was a lady on the tv appealing for women who had taken “Sodium Valproate- Epilim, to come forward as this could cause FACS Syndrome, she listed the symptoms and seeing that article on the news was a light switching on and to this day has saved our lives. At that point I turned to my fiance saying “The kids have this” That is where were upto now.
All 5 children have all been diagnosed with FACS SYNDROME and symptoms we as a family deal with every day are:
Cerebral Palsy , Severe Laxed Ligaments (hypermobility) Valgus foot, Athsma, Incontinence, Autism, Aspergers Syndrome, Noise Intolerance, Facial Dysmorphiaand many other symptoms.
I no your asking yourself “WELL WHY DID SHE HAVE SO MANY CHILDREN????” Quite simply I was never told of this condition throughout my pregnancies. I attended all anti natel appointments with my fiance, Drs appointments and never once ever was this mentioned. I was always advised to continue with my medication as it was controlling seizures relatively well and to increase my Folic Acid. THIS IS WHY I AM ADAMENT TO RAISE AWARENESS OF FACS. WOMEN OUT THERE ARE IN THE SAME CONDITION. FACS SYNDROME is now on the rise as all Epileptic Medicines such as:
- Epilim (Sodium Valproate)
- Carbomazipine and
are being prescribed for DEPRESSION, MOOD SWINGS , PAIN RELIEF, ADHD, BIPOLAR AND AMAZINGLY MIGRAINE. Should this be allowed to continue ?????No it shouldnt, the Government are fully aware of this. As Trustee for OACS Charity and FACT Trust, our aim is to provide as much help and support to children with this condition and to educate the public about this. We have already taken it to Downing Street . If it takes me highlighting my families difficulties and struggles to get the condition recognised then that as a mum is what I have to do and thats the journey my family and I are on.
Twitter : Emma4oacs
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