UK support group's news and forum for people dealing with alternating hemiplegia of childhood
Joanne was born in august 1986, at 3 weeks while being bathed she had some funny eye movements that lasted a few minutes she had already had some stiffness but this was explained as normal reflexes in newborns, but the eye flickering concerned me so I took her to the doctor who then referred Joanne to a paediatrician.
She was diagnosed at 12 weeks with Cerebral Palsy and Epilepsy, but it did not end there. She had seizures often and would be a regular at our local hospitals children’s ward at least 3 to 4 days a week, she continued like this until she was two and a half then things got worse, the more meds she took the worse she got, she was referred to Great Ormond Street Hospital for further tests her eeg’s were always normal. The next few years were very hard for Joanne and us we received a new diagnoses of degenerative brain disease and told she was unlikely to live past 12, we nearly lost her so many times and she would need nasal gastric tube feeding often as she was not able to eat during the days she was so poorly and suctioning as she would also choke on her own saliva. During one of our stays in Great Ormond Street Joanne was seen by Professor Neville and Professor Aicardi and was finally diagnosed as having Alternating Hemiplegia of Childhood she was nearly six years old.
I slowly reduced all of Joanne’s drugs as it was agreed they had made her worse with the side effects and after 18months she was drug free, we tried flunarazine but it made no difference to the frequency of attacks but she was so well in between her attacks, she no longer needed tube feeding or suctioning. Joanne walked unaided at seven and although unsteady because of her cerebral palsy this was a great achievement for her. Although the frequency of her attacks never changed the duration and severity did over the years they no longer lasted hours and days at a time but minutes up to an hour with the occasional real bad one.
At the age of twelve she had her first real seizure and would have about 3 a year. Although her doctors believed she had some seizure activity during a bilateral attack these seizures were different. At 18 yrs she started having more seizures and had to take medication for them she also started back on flunarazine. At 23 she had some funny turns and after investigation had a reveal device fitted which showed she was having Asystole ( her heart was stopping briefly ) so a pacemaker was fitted. Her mobility has also got worse since then and she needs her wheelchair much more than she did, bone scans show osteopenia.
Throughout all this Joanne has always been a happy girl with a great sense of humour, after she left school she went to a residential college for three years where she met her boyfriend Simon in 2005. She moved into residential Accommodation in 2008 where she shares a house with 7 others, she goes to college a couple of days a week has her own programme of activities and has a great time. She speaks to Simon several times a week by telephone and has a holiday ( with mums ) and sees him on birthdays and valentines day, Simon is very important to her. Despite Joanne’s condition she enjoys life and we are very proud of her.