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[Diagnosis] 16 year old son just diagnosed, - Printable Version

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16 year old son just diagnosed, - Pudel - 09-01-2015

Hi, my 16 year old son was diagnosed with moderate OSA yesterday. He is severe in the child scale, but moderate in the adult scale, and his specialist says he would be fall somewhere in between the 2 scales, so I am going with moderate to severe.
He was being tested for narcolepsy, and this diagnosis was very welcome for 2 reasons, firstly it is treatable, and secondly yes he does have something wrong with him and it is not anxiety, and he is not trying to get out of things. The diagnosis was a bit of a shock as he does not snore, and appears to sleep really well. He has always had a very routine sleep pattern, and appeared to sleep well for 9 hours every night. He is not a partier, smoker or drinker. He is in fact a nerd to the nth degree.
I was wondering if anyone knew if there are differences between presentation and/or treatment of children and adolescents than adults with OSA.
It has been about 15 months of tests and investigations to get to this stage. In that time our son has gone from tired all the time, to being sent home from school due to napping in class, and not having the strength to hold his body up. He loses the strength in his body and is holding onto walls to get between classes. If he gets a cold he is of school for weeks cause he wakes up crying tired. He is also slurring his speech and stuttering. We are off to his GP today to get referrals to an ENT, to check for surgical fixes, and a neurologist, just to make sure his other symptoms are not caused by a separate neurological problem. After the ENT we are back to the sleep specialist and probably a CPAP machine.
Any suggestions or info would be greatly appreciated
.


RE: 16 year old son just diagnosed, - Mosquitobait - 09-01-2015

Get the cpap now instead of waiting for all this other crap. Stop dragging it out. I slept like the dead, didn't snore, yet I had chronic exhaustion. You already have a diagnosis. Act on it immediately.


RE: 16 year old son just diagnosed, - Ghost1958 - 09-01-2015

(09-01-2015, 10:54 PM)Mosquitobait Wrote: Get the cpap now instead of waiting for all this other crap. Stop dragging it out. I slept like the dead, didn't snore, yet I had chronic exhaustion. You already have a diagnosis. Act on it immediately.

Bingo. Hes at the stage i was a year ago, minus the crying though i felt like it. Id had it a long time but didnt know it.
Weak, on edge confused, fall asleep talking to folks.
SA will do a number on you.
I just finished havin sinus polyps removed along with some bone that was shoved into my left nostril by them.
Im open airway wise right now as one can be.
Didnt change a thing about my SA.
Go ahead get the machine. An auto.
Ent cant surgically fix apnea. Mine will tell you that right up ftont.)


RE: 16 year old son just diagnosed, - trish6hundred - 09-01-2015

Hi Pudel,
WELCOME! to the forum.
I wish you and your son good luck as he gose through what must seem like endless amounts of testing.
Since he has been diagnosed with sleep apnea, you might talk to his dock and get him started with CPAP therapy.
Hang in there for more suggestions and answers to your questions and much success toyou and your son.


RE: 16 year old son just diagnosed, - Pudel - 09-01-2015

We are seeing our gp today. The sleep specialists here seem to be anti starting cpap without further sleep tests, to test the machine. We do have a business in town that sells the machines so maybe I can talk to them,



RE: 16 year old son just diagnosed, - Jim Bronson - 09-01-2015

It sounds like you're covering all bases. I think the sleep doc is right. I'd hold off on buying a CPAP until testing confirms that he can be helped by CPAP therapy. It's difficult for a child to realize he's going to have to wear a mask for the rest of his life. It might be a good interim solution to help him through his current situation, and it will give you time to investigate a therapy that won't include CPAP. I hope you can find one.


RE: 16 year old son just diagnosed, - kaiasgram - 09-02-2015

Hi Pudel -- The docs want your son to have a titration sleep study where they adjust the machine while he sleeps, until they find the best pressure to treat his apnea. Your local DME would not be able to give you a machine without a prescription.

I'm not sure why you were told to "stop dragging it out." I had the sense from reading your first post that you were covering all the bases as best you can. It's good that you're getting a neuro eval for your son and the ENT referral also sounds like an appropriate one. From what I have read tonsil and adenoid surgery can be effective in the pediatric population in contrast to very limited success in adults -- I don't know if that's more true for younger kids vs. older kids/adolescents. But I do believe that you are doing the right thing by researching your son's treatment options and following through on the consults the GP is recommending. I just hope the process moves along quickly for you.

You asked about any sleep apnea symptoms that are common in kids and teens. It's not unusual to see behavioral problems and ADHD symptoms in addition to the more common symptoms of extreme sleepiness, difficulty waking up in the morning and daytime headaches.

I hope your son gets all the needed consults quickly and that it doesn't take long to get him on treatment.



RE: 16 year old son just diagnosed, - me50 - 09-02-2015

slurring speech and stuttering would concern me a lot. good for you to have all of that checked out. once your son has the titration, don't let them drag out getting him the machine. he will, as other adolescents have, adjust to it, especially if he is told it will save his life and possibly prevent major health issues.

A cpap auto set is the best option for your son or anyone with this diagnosis; make sure that is data capable and not just compliance data. If you need help with selecting a machine and making sure that your son gets the best machine available (and not a brick), the let us know.



RE: 16 year old son just diagnosed, - Pudel - 09-03-2015

Thanks for the info, went to the gp and got the referrals, waiting back to hear from the neuro, as need to send referral to them first, cannot get into the ENT I have used for other son, until November, rang the sleep specialist (he is away this week) but his receptionist was emailing him to see if he wants to see him prior the ENT or if he knows other ENTS and I can get a different referrral. SHe says I should hear back from them early next week, but does seem to be checking emails and may be sooner. I think this kid will give his most to deal with a cpap machine, as he is hating the effect the apnea is having on his life. He is unable to do things he enjoys and missing about 30% of his school time. This kid loves school and is in year 11 he has already failed one subject, and is planning on changing what he wants to do as a result. He is still getting 80% in most subjects but he is battling to keep up and catch up. At this stage we are seriously considering doing year 12 over 2 years as he is not coping with the workload this year. I know this should get better but we do not want to set him up to fail, and he does not turn 18 until after he was due to finish year 12 anyway so age is not going to be an issue. The school has been fantastic, really helpful, but most days he is coming home at lunch time due to not being able to walk in a straight line (literally) So yes I want it fixed, yes I want it fixed yesterday, but we do have to go through the process and support him as best we can as we do.



RE: 16 year old son just diagnosed, - kaiasgram - 09-03-2015

(09-03-2015, 12:02 AM)Pudel Wrote: I want it fixed yesterday, but we do have to go through the process and support him as best we can as we do.

Absolutely. You're doing great. I hope you'll keep us posted.