For a split second we get to relax… although Rett Syndrome does not go away, we feel that we’ve got our little girl back, the anti-seizure medication change seems to have been a success, there haven’t been any seizures in almost 2 months, she’s not tired and irritable anymore, she’s back…with enthusiasm for life…everyone around her notices the change….we relax…revelling in the huge success of our big event and the support and donations that keep coming….we relax….endless dinner table conversations about the event, Elle still so excited about the event and about having dropped the puck…we relax….a case conference with all her service providers, everyone so excited about the news, she’s doing so well, plans are on track…we relax….she’s lost her first tooth and the tooth fairy came and left her money – she couldn’t have been more excited….we relax….our little girl is growing up and we’ve survived another one of life’s milestones….we relax….
But then….Rett Syndrome hits us again and now what seemed like an exciting life milestone proves to be a trigger for seizure activity. Who knew that cutting your adult teeth could be a trigger for seizures…again our little girl is taken away from us…15 seizures in a 36 hours period…exhausted, irritable and clumsy because the seizures cause paralysis which seems to take days to fully resolve. Then a week later just as she is getting back her balance and full mobility…they strike again!! Another 12 seizures in a 24 hour period. NO….. Rett Syndrome does not discriminate…it didn’t matter that it was Family Day weekend and that all Elle really wanted to do was to go practice her skating….again her hopes crushed, because her legs were just not strong enough to walk, let alone skate…our little girl left disappointed, frustrated, irritable…not understanding why the seizures had to come back and we are left wondering why once again our enthusiastic, full of life little girl has once again disappeared.
As said in her own words “Seizures go away and leave Elle alone.”