Life with Lucie

26 years of living day to day with Alternating Hemiplegia.

Written by jillbailey, published about 1 month ago.
Life with Lucie

Lucie was born three weeks early. In the first couple of weeks we noticed that her eyes would flicker on and off. When this was mentioned to the midwife we were told it was because she had arrived early. At eleven weeks during a bath she went stiff and her eyes rolled up. I took her to our paediatrician and he said he could not find anything wrong with her, if it happened again, bring her back. Two weeks later the same thing happened during a bath so back we went. Lucie was admitted and they tried to find out what was wrong. After a week she was transferred to Guys Hospital in London for tesst. She was there for three months. During this time they did numerous tests on her but could not find anything wrong so just called it a rare form of epilepsy. They continued to increase her drugs until she was unable to respond to us, she stopped smiling, reaching out and babbling. We discharged her and took her home. We arranged to go back and see our paediatrician at our local hospital to get a referral to Dr. John Wilson at Great Ormond Street Hospital in London. Whilst waiting for this referral we started to take her off most of her medication. Straight away she responded. Sitting up, reaching out and playing with toys, Her eyes would bop around a few times a day. Her first hemiplegia attack was in August at nine months old. We noticed that she was not using her right arm so back into hospital we went. She was finally diagnosed by Dr. John Wilson at 11 months old. Throughout her years Lucie's attacks have changed every couple of years. When she was little she would have five days of hemiplegic attacks, then up to 14 days clear. At around seven years old she started to have migraine attacks with the hemiplegia, severe pain, loss of colour and then projectile vomiting. This lasted around three years then went away. At eleven she started to have only bilateral attacks lasting from twenty minutes to five, six hours.
At seventeen she started to have hemiplegia attacks in her feet. She would be unable to walk for a few days with no relief.
Lucie' education was varied. She attended main stream junior school with a special needs class attached. She learnt to read and write and enjoyed school very much. At eleven she went to a girls school for moderate learning. Sixteen, almost seventeen she left school and went to a residential college for learning disabilities. She had a brilliant time there. She had so much freedom and made many friends. After three years she move nearer home to a drama college and stayed there for two years. Lucie was capable of looking after herself when well. She did all of her personal care, housework, cooking and spent the remainder of her time on the computer or on her phone.
October 31st, 2009 her life changed completely. She caught a cold virus and within two days was unable to move any of her limbs, she couldn't speak or swallow but was completely aware of everything. It wasn't a hemiplegic attack. She was transferred to London and I was told that the cold virus had done the damage and she would not recover.
Lucie did recover a small amount - her head control is back, so is her speech, she has use of her left arm and hand but that is all. The last three years have been very difficult for her, she got very depressed and stopped eating, her weight plummeted and she was awful to live with but she has turned the corner and now is a decent weight and quite happy. She lives one hour away from us in a home with 10 other youngsters. She is out and about all the time and has fun, she comes home every other weekend. Her hemiplegic attacks have changed completely since the virus. Now they last only a few minutes, no sleep required, bilateral attacks last approximately 15 minutes, any longer and she has buccal midazolam. Before the virus Lucie always had to sleep to stop an attack, sometimes she would have a complete day of attacks only getting respite for twenty minutes upon waking from a sleep.
Her life is so different now, all because of a cold virus, but she has not lost her personality, she has a good sense of humour and always thinks of others.
Written by jillbailey, published about 1 month ago.