by Sue Jackson on November 15, 2014
Faith has been on Zonisamide for a year, we have slowly increased it to the dosage she is on now. 100 mg twice a day. With room for still some more increase.
In seven years this is the best Faith has ever been with her seizures and moods. As i’m writing this she has only had one small gelastic/partial seizure. This is amazing for Faith as her seizure control has never been the best.
We initially started Zonisamide because her seizure pattern changed to an extent that was quite unbearable for her and us. They had become quite long lasting up to 3-5 minutes and stronger in nature. she had also become quite postictal after her seizures sleeping anywhere up to 20-30 minutes after the longer ones.
We were finding that she would have a good spell with each increase initially of about three weeks and then the bigger seizures would start to creep back in. Though with this last increase the good spell seems to be lasting longer which is amazing. I think of it as our wonder drug and just hope that this increase is the one that will finally put an end to her uncontrolled epilepsy.
Faith had surgery about three years ago, where her surgeon removed ¾ of her large Hamartoma. We had tried every anti-epileptic drug available to us at the time, nothing had worked for her. We always said unless things became unbearable we would never put her through any more surgery. And then I have started to hear more and more about the Laser Ablation that is readily available in the US. From what I have read most children/adults who have had the laser Ablation seem to be seizure and symptom free. As her seizures have developed and we have become reliant on the medication we find ourselves thinking of medical intervention again. Though to do this we need to have the laser ablation available over here. As a group HHugs uk is trying to put a petition together of 10,000 signatures.
During my last appointment with our Neurologist she mentioned that a new group is being set up who have a interest in epilepsy and that they have been talking about treating children with HH in one centre. All these actions are exciting and hopeful but in the meantime we are continuing to try and obtain as many signatures as we can. So if you are reading this and haven’t already, please sign the petition and share it encouraging your friends and family to sign.