adrian took claire to the neuro appointment at barrow alone and it went well. he said he liked her neurologist, dr. ng, even more this visit than before, which is a comforting thing for us. he made no mention of the scary ATCH steroid injections as a treatment option for claire (phew!) and instead wants to try raising the doses of the two seizure meds (keppra and vigabatrin) that she is on currently.
if that makes no difference in the next couple weeks then we will try the ketogenic diet. it’s basically atkins to the EXTREME. she would have to start it in the hospital under watch of a dietitian, who would also train us on implementing the diet. many families see a great reduction in spasms on it so we have no problem giving it a try if recommended. it will be difficult to stick with- we’d even have to switch what wipes, lotions, shampoos, etc she uses but if it helps we are all for that. and if it doesn’t help then we have a couple more medications to try (which i am praying is not needed.) from here on out the new meds to try are more toxic to the body and have a lot more serious side effects than the tiredness, insomnia, irritability and spittiness that we are dealing with now. so in the next couple weeks we will just have a more sleepy, grumpy girl as we increase the dosages. but at least she is a sweet, cute, sleepy grumpy girl (see evidence below)
please keep praying that this will work for claire and that God would miraculously heal her brain. thank you again for all of your support, we love you guys.