So last I posted we were waiting to visit NYC to see a sleep doctor there. After much waiting, we got that appointment all set for January. A few days before the appointment, we found out that our insurance wouldn't cover it......but they would pay for us to go to Burlington, VT. More waiting. This past Friday was the first available appointment. It was a very long time coming since we had been trying to see a doctor since October and Alexander had his sleep study in February 2013.
But we made it through and we're back! He was a wonderful doctor, and we're so glad that we had the privilege of meeting with him. He answered all of our questions (that we could think of at the time) and explained the previous sleep study which no one had been able to really sit down with us and do yet. There has been a lot of speculation by the doctors locally that Alexander suffers from narcolepsy, so that was a big question we posed. Interestingly enough, you typically do not test for it until a child is around 8 years old. So for now, that is up on a shelf. After looking over his sleep study, his sleep log (which we had to fill out for the 2 weeks prior to our visit), his health history and our observations, he felt his main issue is parasomnia - all of the crazy stuff Alexander does while he sleeps. His brain is just all over the place while he sleeps and not only does it make him tired the next day, you can actually watch him all night. There is a very long list of parasomnia behavior and Alex checks most of the them off the list. Some of his favorites are sleeping with his eyes open, being very active in his bed, talking in his sleep, and sitting up having a conversation with you.
The doctor said that we have done everything behaviorally/lifestyle-wise to improve his sleep quality, and that removing his tonsils and adenoids completely removed any possibility of a breathing issue - which he said was really borderline from the start. Either way, there's little else that we can do. He does not think another sleep study would be helpful at this time (which we are totally fine with). The only option left is to try a medication to help calm his brainwaves at night. Because he has had some of these sleep behaviors since he was born, it's anyone's guess if he will grow out of them, but he is still well within the window of when he can. The medication is only a temporary bandaid in the hopes that it will get him through this time until he would grow out of this. It is NOT a long term solution by any means. We were EXTREMELY hesitant to try it, but if we are going to try something, now is the time before he starts kindergarten. The medication he put him on is Klonopin. He started it this week, and his body's reaction has been very mixed. I'll post more about that once he's through the transition.
Also this week Alexander had another upper endoscopy. He has been having a lot of trouble with his reflux. He switched medications to Protonix and that went much worse than the Prevacid. His food was coming back up, he was having pain and laryngospasms again from the reflux. The scope looked fine - she just saw the hiatal hernia that we already knew he had. Without anything else visible, that seems to be the main cause of his troubles and there is little we can do about that. We'll get the biopsy results in a week, but we aren't expecting anything remarkable there. He is back on the Prevacid now, and we are just continuing to modify his diet as he needs. For the past two months he has been having a lot of trouble with constant throat clearing and coughing. We felt it was in large part due to the reflux because it was often in conjunction with eating. But his GI feels it may be due to his rhinitis. Once the biopsy results are in, we'll see if we should consult with the ENT or just let it sit for awhile.
So things have been busy. We're tired. I'll post more when I know more.
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