Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 Hello bew, The last sleep study that I did produced similar results. I had more of a problem with restless legs than apnea. The legs were jerking upward sometimes quite violently. Neurontin was prescribed in small doses. I started with 300mg, then 100mg, and finally 50mg at bedtime. This has been going on now for several years and the headaches are a thing of the past. At 213# that's a very small dose. I don't know how much would be appropriate for a child. My general tenet is that the least amount of a drug to do the job, the better. I have tried deleting the dosage and the jerks and headaches come back. Best of Luck, EdM from NH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2006 Report Share Posted August 22, 2006 Hi there... Sometimes waking with headaches in an indication of low oxygen saturation at night due to shallower breathing..this should be checked as it is known to happen with CMT. Our neuromuscular clinic is doing a study on the incidence of this in children with all neuromuscular diseases...check the HNF website for an article posted there on the sleep study...Also could have restless leg syndrome (RLS)? I think it can strike at night, right Gretchen? I'm not sure if it is an epilepsy drug they use to treat it but others have posted about having CMT and RLS. It must be so frustrating to not be totally happy with 's care. It makes me frustrated just reading your post and I'm not 's mom. Brings out the 'mother bear' in all of us. Stick to your guns, you know him better than anyone. Best of luck Sally Quote Link to comment Share on other sites More sharing options...
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