I couldn't believe my last post was February, my apologies to anyone who has been waiting for my next blog, if you have a child with a similar story I know you will understand how things seem to peak and trough....
Toby was so very nearly off clonazepam when we hit breakthrough seizures in April... This was difficult to to live through as it felt like we had been put right back at the beginning again. However it only took a couple of weeks to get back on track as we kept Toby on just a small dose of clonazepam .5 mg to be precise. Although I was hoping for a drug free journey for Toby I realise that if he needs them to get where we want then its justified, and I was apprehensive about the withdrawals from this drug also....
The plan now is to slowly take away his topiramate and we are half way through that, if we run into trouble a new one will be trialled .... Again I'm apprehensive but I also feel I have the strength and the power to say no, I know if a drug is going to work or not as I am so in tune with Toby and although he is not seizure free yet he is as close to it as we have ever been. He is at his worse in the morning having a few tonic seizures upon waking, throughout the day with high ketones his drops present in the form of a small nod and his concentration is so much better as he will play with his toys for ages, claps when he gets something right and is starting to become more vocal. Toby understands so much more, as Jo told me how he had been in music at nursery I said to him " have you been clever boy?" I
Did not expect hi to answer "yeah" whilst clapping his hands! Fantastic!
Life is still hard with Toby as it only takes one drop seizure for him to break a bone or fall funny, but we are dealing with each day, I'm loving work and the 'normality' it has brought back to our family, I have noticed even Hallie is becoming more confident again as her family is clearly becoming stronger what a journey she has been through in all of this she is a priceless treasure, a beautiful person and I'm so utterly proud to have her as my daughter..... ❤❤❤❤❤❤❤❤
