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Neurology (Expert Forum)
Sleep Apnea in C.P. child
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Sleep Apnea in C.P. child
by Debi-P, Nov 20, 1998 12:00AM
I have a 3 yr old daughter who has C.P. Recently we went to see a pulmonologist who said he thinks she is having obstructive apnea according to my description of her at night. He wanted to do another sleep study to prove his point, since the last one was 19 months ago. His plan is to prove that the obstruction is occuring from her tonsils and adenoids (adenoids) and have them removed. How common is this for children with C.P.? I have refused another sleep study due to the fact of her not being able to even get into REM sleep with the wires and environment she is put in. He has now suggested I see her ENT doctor. Her apnea is 20-40 seconds sometimes, her chest moves but no air is exchanged, she breaths loud so I know if air is exchanging. How can I get them to do the surgery if necessary without insiting on a sleep study? Also, I have a question about rhizotomy? She had heel cord lengthening in May 1998 and is showing progress, do you think rhizotomy could help her more? Do you know of anyone close to Cincinnai, Ohio that we could consult with? Thank you for your time and expertise, We really appreciate it.
Debi Powers
Dear Debi:
I am sorry to hear about your daughter. Sleep apnea is not uncommon in children with CP. It sounds like your daughter is having obstructive apnea, chest rise without air exchange. The usual first step is trying to remove the obstructive element. This is commonly, but not always the tonsils and adenoids (adenoids). This is a surgery that is rather common and usually the side effects are small. I am not sure why you are having problems with surgeons concerning have her tonsils removed. I would think that since you can document that she has large tonsils with adenoids (adenoids) and obstructive sleep apnea that this would be the logical next step. The ENT doctor is the usual surgeon in these matter and thus a referral to an ENT is also logical. See what the ENT says about the need for a second sleep study before surgery. As far as rhizotomy, here at the Cleveland Clinic, we team up with a muscle expert and a neurosurgeon to effectively do rhizotomies. We find this very helpful in CP children. Although we are 5 hours away, I am very familar with our program. I would think that Cincinnati Children's would also be a good place. Here, during surgery we stimulate different nerve rootlets to determine how many need to be denervated of optimal functional gain. This should be standard of care at any place that you take your daughter to. Are your daughter's bowel and bladder function okay? Does she have much spasticity? Wherever you go, should have a complete program with GI, Orthopedic, Neuro(Pediatrics), Urologist, OT, PT, and Neurosurgery all involved with your daughter's care. Best of luck with the apnea and future care of your daughter.
Sincerely,
CCF Neuro:Pediatrics MD, RPS
