09-03-2015, 05:12 PM
(This post was last modified: 09-03-2015, 05:34 PM by Mosquitobait.)
Pudel, I know I used strong language but you are an advocate for your son. This kid is missing his teenaged years and now you think it will be NOVEMBER before he gets any help. Don't let the system drag you down. Call the doctor next week and insist that he arrange for your son to use an auto-machine immediately and it can be changed later after the titration. Don't continue to let your son suffer because of slow medical care. It took me FOUR MONTHS to get my machine. I went and bought a used one because I could not get the medical mafia to move any faster and I had reached a point where I was not going to be able to drive any longer (and I'm a caregiver for a handicapped sibling). Get him to write a prescription now - buy a machine from online or get a used AUTO machine (doesn't require a prescription when you buy from an individual). Waiting for insurance or other tests is just forcing this kid to suffer longer. INSTILL in your doctor that it's already taken 15 months to get this far. Be a nag - remember the squeaky wheel thing usually works. OK, off of soapbox.
We have now seen the neurologist and the ent and see the sleep specialist next week. Both appointments were interesting. The neurologist has diagnosed our son with ataxia, that is episodic. She says it may be due to sleep apnea, it may be made worse by the sleep apnea or the sleep apnea may have caused a progression in the ataxia. Our son had a diagnosis of truncal imbalance at 4, and that seemed to get better with swimming lessons and later tap and jazz dance lessons. It may be that he had an underlying ataxia which has progressed independantly of the apnea (worse case scenario) or it may be associatted with the apnea and we should see an improvement if that is the case. We got an MRI done and there is no noticable atacxia of the cerebellum, which is on the large side of normal. But she said this is not an indication he does not have ataxia just that it is not noticably affecting his cerebellum. She talked blood tests but they take weeks to get results are expensive and need to be sent overseas to be read, and she said if it is one of the ataxias and not related to his apnea a few weeks or months will not change his treatment or the outcome. SO we get the ENT consult, get the CPAP use it for 3 months and see if he gets better and go back. HE is unsure it is totally related as it is not necessarily caused by tiredness. We saw the ent last week and there is nothing surgical that can be done. He has not adenoids to speak of and his tonsils are small. He did an endoscopy and the apnea is caused by his troat colllpsing due to flacidity in the muscles of the throat, loosing a bit of weight may help, but our some is a bit overweight (the weight fain has occurred since the tiredness though) but the good news is he has a good sized nasal space and will only require a pressure of about 9-10 and is a good candidate for cpap. He initially said his septum was as straight as a die, but noted some small deviation on the endoscope, but felt operating would not help him breath better. He also commented that they now know a lot of kids they routinely removed tonsils from, cause they were big years ago, and suddenly got heaps better, were probably getting better due to an improvement in their oxygenation at night, not from the possible infections. He also said apnea can cause neuro signs and was hopeful the ataxia symptoms may abate with the cpap. Mind you it seems ataxia sufferers have a higher incidence of obstructive sleep apnea (23%) as it can cause the flacidity in the throat muscles. Looks like CPAP and most likely for the foreseeable future, he did say it was unfortnate at my sons age that he face a lifetime with CPAP but the improvement in his life will be worth it.