In the three years of training to be a Paediatric Nurse, I sat in many lectures regarding Neurological conditions, children with Special needs or disabilities. I even sat in on a special lecture given on Children and Adolescents with Epilepsy. I never once heard the words Gelastic Seizures. I’ve spoke to many young doctors over the last five years, since having Faith, and still many of them have very limited knowledge regarding Gelastic Seizures. Epilepsy itself is a minefield of different courses and effects, meaning it is such a specialty, and then you have children with HH and they again are unique. So even though I do at times get very agitated with medical professionals, who claim to know what they are talking about and actually No they don’t. Is it any wonder they are guessing most of the time?
When I look back over the past five years with Faith, we have gone through such a rollercoaster of patterns with her seizures. In fact there is no pattern and this in itself is mind boggling. My mum will ask me constantly how can she be so bad at the moment when she was so good last week. I DON’T KNOW.
As a baby we have gone though some scary times with her seizures, when she would be in status, meaning her seizures were prolonged. Over the first two years, we found ourselves in either A&E or the HDU unit of the Children’s ward, practically once a week if not twice. I think these were the scariest moments of my life with her as yet, terrified that she would not come out of one. I think also having a little bit a medical knowledge isn’t always a good thing.
I remember at the beginning of our HH journey also, I would stress over her seizures developing to Tonic Clonic Seizures and desperately searching for answers as to would it develop to this state and when. I know now that all our HH children are so different and there doesn’t seem to be any definite answers to all our questions.
Going back to a pattern with her seizures I have kept a diary over the years marking down each week what gap we are up to between them to try and establish any sort of causes to her increase. Sadly nothing has become evident. I can’t even say noise bothers her any more, I used to think as a toddler if we had a family party, she seemed to be worse during and a few hours after it, but that seems to have stopped being the case as she has got older. We did for a while also associate an increase in activity to when her hormone injection was due, but there again this has been blown out of the water since, as she can be as bad before or after the injection.
At present though she is very good with her Gelastic seizures, having them at the most every 1 ½ hrs, though I have noticed over the last few days some having been lasting a bit longer, where as normally they last for about 30secs a few have been hitting a full minute. Hopefully this means nothing. I don’t find a get a bit obsessional about them.
Then also there is the old question for me at present of what is seizure activity, I’m saying they are good, but she is crippled with rages and sadness, so is any of this seizure activity? I DONT KNOW. Then do I need to know, or just am I looking into things too much and should I just deal with the symptom.