BiographyAbigail started showing symptoms the day after she was born - twitchy movements, the midwifes and doctors said that it was nothing to worry about it was from the long labour and being delivered via C-section.
I was back and forwards to our GP - he thought I was a neurotic first time mum. When Abigail was 5 months old she turned blue around her lips one afternoon so I took her to our local A&E, the paediatrician there said that she had croup, but as he was examining Abigail he asked me who she was seeing for her seizures! Abigail had always had some eye movements but EVERYONE I mentioned it too said that it was wind and I was not winding her properly.
We were referred to see a specialist epilepsy paediatrician who looked at the video I had taken (New mummy syndrome) and said that she thought it was just an " Abigailism" and nothing to worry about.
Our paediatrician showed the video to some of her colleagues and :
1 thought it could be nystagmus, 1 thought it could be dancing eye syndrome, and 1 thought it could be Neuroblastoma - if it was this there was a 70% chance we could lose Abigail.
The only way to tell for sure was to have an MRI and there was a 12 -16 week wait unless we could pay to go private.
After having all the tests, we went back for the results 3 days before Abigail's 1st Birthday and it just so happened that a visiting Paediatrician sitting in on our consult looked at the video and the test results and said Abigail had AHC - we only heard childhood and thought that she would grow out of it, got home and looked on the internet and our whole world crashed around us - sounds dramatic but that is how we truly felt.
We plodded along with Abigail suffering with hemi's and attending different therapy groups but no one knew much about the condition so we decided that we had to know every bit of information out there, I tracked down the Prof who was the man in the know about AHC but he had recently retired - I found his private e-mail address and emailed begging for a meeting he saw us and it was good to speak to someone who had experience of the condition.
When Abigail was 2yrs 7months and Hugh was 5 months, Abigail had her first seizure and we entered into a completely different ball game.
Abigail is now is 7 years old and yes it has been a tough, rocky road BUT she is a happy, loving little girl who along with her brother complete our world.
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