Sleep Study

Aulton is scheduled for a sleep study next week at Banner Children's. I am excited that we found a great doctor who may be able to help us with this on-going problem. It's been over a year that Aulton has been waking in the middle of the night for no apparent reason. After doing a bit of research, I found out that congenital myotonic muscular dystrophy kids have problems with sleep apnea and with periodic limb movement (plm), which is similar to restless leg syndrome. The difference is that it can also affect arms, and in rare instances, other muscles groups (ie bowels, etc.). The sleep study is mostly being done to rule out apnea, which he likely doesn't have, as his airway and palate are not affected by CMMD (a miracle in and of itself). The doctor also feels his problem is related to PLM. He was up at 3 a.m. last night and didn't ever go back to sleep. For those of you who know about RLS, it is very uncomfortable. For Aulton, it seems, it is painful enough to wake him and keep him awake. A diagnosis will be helpful, but most children with CMMD don't start experiencing PLM until they are adolescents. The doctor is unsure of how, or if, we will be able to treat it. The medication they use is not recommended until children or 15 or 16. It is much too strong for a three-year-old. The reason I'm posting this is because I would appreciate it if you would keep him in your prayers. I will be happy with a confirmation of the problem, but happier if he doesn't have to suffer in pain for the next 12 years, especially since he can't tell me where it is hurting. Thank you!