We are learning a great deal about sleep disorders in children. Back in January, my daughter was diagnosed with Narcolepsy after 2 sleep studies and a nap study. Since that time, the sleep doctor has been unable to find a medication to treat this condition that my daughter is able to tolerate.
She has trouble focusing, is sleepy during the day, lacks motivation to do anything, has trouble with her school work and is part of the Hospital Homebound program even now after school has finished. To put it lightly, this sleep disorder has affected her in all areas of her life.
My husband and I made the decision to seek a second opinion about the diagnosis of Narcolepsy and/or treatment since Sammi has not gotten any relief for about 6 months. When concerns came up about her getting anesthesia during her tonsillectomy, we really wanted to be sure that we were doing everything to be sure she is safe.
Well, yesterday was the day. We met with a pediatric neurologist at All Children’s Hospital, who looked over my daughter, Sammi’s sleep studies and nap study results. She also did a neurolgical exam, asked all of detailed questions about her sleep history, her mood, her school work, etc. We were told that the sleep studies did not measure the carbon dioxide levels, something necessary.
Since Sammi has enlarged tonsils and adenoids, these levels are very important to determine if Pediatric Sleep Disorder Breathing is occurring, another type of sleep disorder in children. Why was this not done before? It could be because the sleep doctor is not a pediatric specialist and the sleep lab does not specialize in children.
Our plan now is to have meet with the Pediatric ENT doctor at All Children’s Hospital. We will need clearance from the Pediatric Cardiologist after the abnormal EKG recently. The surgery will take place at this hospital since they are equiped to handle her specific needs.
Once she recovers fully from the surgery, she will either go through another sleep study or nap study. Then a diagnosis of the specific sleep disorder she has will be decided. Remember that children need to be treated by pediatric doctors, specifically when they are specialists.