Monday, 5 March 2012

Is this the magic potion?

We are into week 3 on stiripentol and following the introduction of the clobazam there is not doubt in my mind that Toby's myoclonic seizures are improving... The benefits of the spasms being in remission are evident in Toby's development as he finds the time to play with toys and explore in his own little way. Toby has learnt so many things this week alone however the myoclonic seizures have made him so limited in his play, by this I mean that actions and sounds could and are triggering off a seizure, this still results in him hurting himself badly as he falls forwards.
It would appear that stiripentol speeds things up and clobazam sedates.... In a round about way ( without the science ) the theory then is that the 'magic dose' is finding a happy medium I hope we are nearly there!
Toby is becoming adventurous, cheeky, he's speaking and babbling and even put a shape into the shape sorter this morning ! I couldn't believe it considering a couple of weeks ago Toby was still learning by putting every object in his mouth as a baby would, although he still does this the main thing is he's progressing. At my sisters this week he has climbed onto a bounce and spin zebra and even climbed onto hallies desk ! My happiness cannot be put into words although it's laced with caution as I will always expect seizures to return due to what we have been through !
I could not imagine going through this alone and I am so grateful to my family and friends for supporting us at this time, even with support it's hard my heart goes out to all that maybe dealing with similar journey please contact me if you want to talk about anything !
The hardest thing I think has been explaining to other people the severity of Tobys condition whilst staying strong! When I lose it others don't know what to do and for some ignorance is bliss!
My brother is now on a vigorous training regime to do the great Manchester cycle to raise awareness www.justgiving.com/manchester52 so proud, my sister has had Toby for me despite having 3 children of her own, and I know he feels safe there. Uncle paddy has tried to convert toby to united and auntie em has been my emotional text support amongst other things (exercise partner)! My Mum and dad have exceeded expectations as parents and truly would do anything for us but my biggest praise and pride goes out to Hallie our 6 year old daughter (who I hope reads this one day) Hallie is the best big sister and daughter in the world her maturity and bravery has shone throughout this whole ordeal which is far from over. She's not jealous, or embarrassed, she loves, nurtures and plays with Toby and has truly been my rock and has forced me into keeping perspective of the situation regardless of Toby's needs she needs me too I love you Hallie xx I have not yet mentioned Mark my husband of course he has played an important role in all of this ordeal..... but he has also needed support as I have, I have decided to write a separate mention to Mark on a post of his own as I have a feeling it may be long .... Love you Mark xxx

1 comment:

  1. Hi

    I am so glad you are brave to blog all about Toby's seizure's. As an epileptic sufferer myself (and have been since I was 10 years old) I am not aware of the "other side of the coin so to speak" so I find it so heart breaking to read. It is good to you know you have support of your family and his sister is your rock too. Please keep raising awareness of his condition. I really have my fingers crossed that you have found the "Magic Potion"

    @Angelfish42

    ReplyDelete