My little boy aged 2.5 was diagnosed with Infantile Spasms just before Xmas. After a few absence seizures since July, he finally got an EEG in October which showed hypsarrhythmia. No diagnosis at this point because developmentally he was fine and met all his milestones. He was started on keppra and clobazam which controlled seizures for two weeks, then they returned. Steroids (prednisalone) came next as second and third EEG showed hypps still present. The steroids have been awful for him, but we are now weaning off.
The latest blow has been in the last 48 hours - he has totally stopped talking. This has happened so suddenly, almost overnight. He has stopped playing with his toys and only smiles at us, and potters about the house. It’s like we have lost his personality, and I wasn’t prepared for this at all.
We feel so alone as IS usually happens in younger babies, there is nothing out there for parents of older children developing this dreadful disease. We are yet to find out the underlying cause for his, the MRI scan is on Tuesday and we are waiting on the genetic test results.
My life has fallen apart. I cry all the time, have no hope for the future and can’t bear to live through the pain of watching him disappear before our eyes. Every day is heartbreaking and I can’t face carrying on, I have to admit I have been having suicidal thoughts because I just don’t want to be alive if this is the pain that has to be endured every day.
Please tell me that his older age and normal development up until seizures will mean he will be ok in the long term? I can’t face living day to day not knowing whether my baby has a future or not.