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Julie's Website

The Sleep Studies

New! PT 2011
August 2008 Bethlem Myopathy/Ullrich CMD conference notes
October 2005 Bethlem Myopathy/Ullrich MD conference notes
Update 2006
Update 2005
Update 2004
Julie's Hypotonia Story
The Medical Puzzle
The Muscle Biopsy
The Diagnosis
Physical Therapy--updated in 2008!
Seating at school
Julie's Wheels
The Sleep Studies
Julie's flexible Daddy
Bethlem Myopathy--DNA and Muscles
Julie's Bethlem Myopathy Book

Julie's sleep study at CHOP 7/03

Click here for "Sleep Study 2006!"

The reason for Julie's sleep study is that the neuro is systematically ruling out causes for Julie's fatiguability. She had bloodwork that all came back normal for things such as anemia, blood sugar, and thyroid problems. The neuro did want to do an overnight pulse-ox at home, but the insurance company preferred to do a full sleep study. It was a pain in the neck, but it is certain more thorough and covers many more issues than just a pulse-ox. The sleep study will rule in or out obstructive or central apnea, hypoventilation, and anything else that might prevent her from benefitting from a night's sleep. If all is normal on the sleep study, then I suppose we can safely assume that it is "just" her myopathy that makes her tired during the day.

Julie was a real trooper for her sleep study! After much reassurance that nothing would hurt and there would be no needles or blood tests, she was pretty relaxed for the whole thing. First, the technician pasted five wires to her head on her hair.

Julie starts getting wired up!

Then, there were four wires on her face, one under her chin, and one behind each ear. These stayed on with medical tape. Two wires taped onto each leg and then there was a band around her chest and a band around her stomach, each with wires of their own.

Julie's all done! What a patient, cooperative girl.

Finally, the tech placed a tube and a little wire under nose with prongs that stuck just into her nose to measure exhalation. The tube is like a nasal canula for oxygen. Julie was not too happy with the tube because she was worried that she wouldn't be able to smell her blankie when she sucks her thumb to go to sleep. I can smell blankie three feet away, so I knew it would be ok and Julie did calm down quickly. Oh--almost forgot the pulse-ox on her toe! She had this when she was hospitalized in May, so that was familiar and no big deal.

Julie reads a bedtime story and gets ready to sleep in a strange place!

Julie packed her own suitcase including a nightgown, a change of clothes, stuffed animals and bedtime stories. She also packed a headband, a crown, two necklaces, three rings, four bracelets, a picture of her preschool class, and sand art that she did on July 4th! LOL! Nonetheless, this helped her feel more in control of the situation, so it was well worth it.

Last story and it's time for bed!

Julie went to sleep about an hour later than usual, so she was really sleepy. She complained a little bit about being nervous, but I was on a cot just next to her, so she knew I was there and would be there all night. After two false starts, she settled down and fell asleep. She slept through the entire night (she ususally does) and woke up around 6:15am when she heard the other boy having a sleep study wake up and the commotion that went with it.

The tech said that he did not notice any signs of apnea, just a lot of leg movement. However, there are 1,100 pages of data that were recorded so it will be about a week before the results are ready! The set up was very cool--all the wires hooked into a box which sent the information to a computer in the monitoring room. The screen showed about two dozen wiggly lines moving across as Julie slept. The tech explained what each one was to me, but it must be some kind of skill to be able to interpret all that!

Julie did a great job sleeping with all these wires attached. She was a real trooper!

Click here for Sleep Study 2006!