It's been a while since my last post, and an emotional roller coaster once more on medicine changes. The stiripentol just wasn't working but as usual the doses were pushed to limits and we lost Toby deeper and deeper to drugs.
I curse myself for falling into the trap of putting my hope in a medicine, its hard not to when after 14 months its all you feel you have.
The doctors and lets not forget the experts in neurology often highlight that it takes time to find 'the right dose' or that every child's epilepsy malfunction is different so it can take time. Every thing seems to take time so when do you stop looking for a cure? The answer, we found, is when our time with our son was dogmatic, stressful, draining and exhausting as the quest to find seizure freedom actually lured us into a world where we forgot the finer things, the few words our son was saying, his quirky ways, gestures and big big smiles...... As the doses got higher, the finer things got clouded and things were actually getting WORSE!
Toby still has no cause for his seizures, and he is to have further genetics testing, but we are still even more convinced his streptococcus infection in 2011 brought this on.
It wasn't until we weaned Toby from the Stiripentol, and reduced the highly dosed Clonazepam that our son came, back, giggling, talking (words he already knew) but clearer! two words together again "hiya Daddy" "Hiya Deesy"
Toby's posture and balance improved and he learnt to climb his climbing cube, and go down the slide, Toby now climbs on everything! :) keen to explore, intrigued by cause and effect toys again and most of all ...........less seizures! yes they were still lots daily but they were more controlled....... we introduced Topiramate........ things were going fab.......until......... and dose increase too many and seizures were taking a turn for the worse again......Dr Newton ........agreed to return to the dose he was at when things were good............ i shall write about it in my next post......:)
