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.
Second Opinion
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.
Upcoming Plans
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.
Connie Roberts
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That is so true. We learned from experience that children react to things differently than adults do and sometimes children don’t always express what they are “feeling” the way that an adult can. I will say (also from experience) that no matter how “qualified” the pediatric Dr may be, he still may be a complete jerk 😉 It is always best to choose a pediatric Dr. that not only are you comfortable with but also that your child feels comfortable with. Just putting that out there as my “Free Friday Advice” lol
Twitter: conniefoggles
says:
Very true, Tammy. My daughter just told us now that she didn’t like the sleep doctor. I told her that she’s allowed to let us know how she feels about any of the doctors we take her to from now on including the doctors she sees now. I’ll take your free advice any day!
Nice and Informative Posting (:
Thanks For The Information