Yesterday evening, I rec'd a call from the nurse practitioner that Jayden was supposed to see. Unfortunately, we had to cancel the appointment b/c Tricare wouldn't approve the office visit or any tests that she ordered since he was not an established patient with any of the affiliated Drs. The medical insurance obstacles. Well, she wanted to see if there was any way that she could help over the phone, as she had heard about Jayden having complications and no neurologist to turn to for help. She asked for some detail and thought really hard on how she could help and what else I could do to get him through until January 4. Unfortunately, the Dr that he's going to be seeing is out of town and won't return until January 4, so that's why he cannot be "worked in" on her schedule, however, the NP told me that she'd make some calls to see if he can possibly get in to see one of the partner Drs prior to the appointment on the 4th. She said "No promises", but I'm truly not asking for promises, just for someone to show some concern for my son and to actually help us. And she's doing just that.
We talked for about 20 minutes and after giving her a brief history along with the current medications and dosages, we both came to one(possible) conclusion: The Trileptal could be causing the seizures to get worse due to the extremely high dose he's on since it's being used as the sole seizure medication right now. I always wondered if that was the case b/c there have been multiple occasions when Jayden would have seizures immediately after taking his medicine. I do not plan to stop this medication without first seeing the new Dr (neither did the NP encourage me to stop it) because I know that could very well make matters worse.
Today has been a pretty bad day for him today. He was having seizures this morning so I put him in bed for a nap to see if that would help. He only slept for an hour (he usually sleeps 3-4) and he came downstairs and immediately started having the seizures again. He's very uncomfortable right now and I'm just hoping we can avoid the ER tonight...
2 months ago