This may be long but I hope I can condense it enough.
Yesterday we saw neuro. We got a new dr beause our last one retired :( but this new one is really great. Ty is now having absence seizures and teh dr believes more seizures in his sleep as well. Ty is 4.5 and still taking 4-5hr naps daily which isn't normal for this age so the neuro ordered a sleep study so they can look for apnea, unwitnessed seizures, or anything else they may be able to find that could be disrupting his sleep at night. He is upping his keppra dosage hoping that will stop the seizures, if not we will try breaking the dose of his keppra from 2x daily to 3x daily to try and combat his motility issues. He thinks those weird vertigo episodes we had in June were a result of his motility issues and how his body absorbed his previous seizure med, that his body would end up absorbing a larg amount suddenly causing him to become toxic and causing those issues. He also thinks that could be why it wasn't working all that well and we got switched to this med. However this med is helping so that is fine to stay on it. He also saw Ty has some left sided weakness. Not really what I was expecting and sad we have to hav emore testing and things may not be as good as I thought they were.
Today we saw our GI. Good news: we are weaning his reflux meds, yay! And we lowered his senna dosage :)
Not so good news: we have run every test available in our state and have to get testing outside of teh state. They want him to get manometry testing and prefer we go to Colombus or Boston for it but will see what insurance approves. So we need prayers insurance will approve it and help with transportation too, we live in AZ so both places are far away! She started on Ty on a new med called Amitiza and it comes in only a pill so they had us get a pill cup and it sits the pill on a shelf in the cup and then as you drink you drink the pill.Ty took it on his first try! Then I got him to take his 3 creon pills too! It was awesome!!! Next week we are goign to have a colonic marker study again just to check on it and see if anything has changed and maybe it can help give us a little more idea of where the issue is.
They are pushing genetics to get us in sooner and get testing going so they can get an underlying diagnosis found/made. Right now our appt is set for 12/12/12 (uhm, freaky, just realized that) but after that appt we have to wait for them to fight insurance on the tests needed which is a longer wait then add on the time it takes for the test turn around, we are looking possibly at 6 months from now before we get any remote answers! Oy!