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son had sleep study


morgan617
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Does your son suffer with dysautonomia as well?

I'm assuming he was having some type of problem to warrant having a sleep study in the first place.

I would suggest that if he is feeling tired, fatigued and/or waking up in the mornings feeling non-restored then talk to the Dr about giving the CPAP a trial. I had a sleep study done a long time ago and was told there were some slight breathing problems but nothing they consider to be "true sleep apnea" however, the Dr. also said that since my body was so sensitive that even though the problem appeared mild to them, it could be too much for MY body to handle.

If the CPAP helped then it would be worth it to at least give it a trial run!

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When I was little (6 years old) they called my dausautonomia .....Hypersomnolense and Daydreaming! Or should I say they brushed my dysautonomia off as Hypersomnolense and Daydreaming....I would definatly check it out. I never had any amazing test results...just mild abnormalities here and there that all got brushed off.

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Jake has juvenile onset arthritis, inflammatory bowel disease, hyperparathyroidism, migraines, anxiety, severe reflux, slow gut emptying, etc etc. I think pots may be in the mix, but it's hard to know. he tolerates meds pretty well, as a rule. A good thing since he takes about 26 pills a day.

So the sleepiness is new. He used to be a total night owl and now sometimes goes to bed before us. His dad has narcolepsy, so i guess I was looking along those lines. Boy, didn't we give him all the good genes....

Anyway, they said he had mild apnea in his rem cycles. But the lab didn't feel the need to put him on cpap.

So his pcp said no big deal and the sleep study doc said maybe he should be tested further. He's really not interested and I don't think he'd be very compliant on cpap. He does seem a little better since backing off a higher dose of celexa, so maybe will just sit on it awhile. Will let him decide. Thanks for the input...morgan

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heya morgan -

sorry i'm a bit slow in responding. i'm SO behind on posts (including some others of yours that have made me SO happy...your renewing your vows, your hubby's trip/new business, etc...i have been reading & smiling with you despite my lack of replies...)

but i digress...

re: the sleep study, there are SO many elements that they monitor/evaluate during the studies which can mean or not mean so many different things. just b/c something is mild doesn't mean it's not worth at least knowing about. and while some aspects of the studies are pretty standard, different doc's interpretations can be different (surprise, surprise).

as i had a study myself not too long ago there's a couple things that come to mind that you may want to pursue. first, i would get a COMPLETE copy of the sleep study results. not just the summary but the full report which will include lots of numbers, charts, graphs, etc. you/your son have/has every right to have a copy. it's worth it to know more about details such as what position his apneas were in, etc. i've been reading up some so may be able to help a little with questions you then might have about it, but there's a sleep apnea forum that you could also head to where there is actually a section for sleep studies. you can post the study results & people - perhaps most importantly a guy who is actually a sleep tech - will give you more info. i found it very helpful. the address is www.apneasupport.org. even though it's geared toward apnea other sleep disorders are also discussed. they also have a chat room.

also, even if you/he decide not to pursue anything at this point, the apnea dx is definitely one to keep in mind b/c it tends to get worse with age in many. and while i doubt it's the sole cause of any of jake's medical problems, it has concretely been linked to some of his diagnoses, i.e. reflux, migraines, anxiety, etc.

such that for some the problems have improved with good treatment for the apnea.

hope this helps,

B) melissa

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Thanks everyone for your input. I will probably make him get further w/u because I'm pretty pushy regarding his health. He is starting humira on the 3rd of March and maybe will discuss it at that time.

Don't worry Melissa, I'm barely able to post and I don't have anything to do...morgan

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