My little man Harry has PRS, and we only recently discoverd that he has Severe Obstructive Apnoea. He is 3 and half years old, and they only worked this out a couple months ago.
What I find very frustrating is the fact that it took both myself and my wife to really push for Harry's doctors for a sleep study to be done.
These professionals know of all of the complications that can occur with PRS, yet didn't seem too interested in performing all the tests to rule out any complications that he may of had.
I feel that once a baby has be diagnosed with PRS, it should be a matter of "ticking all the boxes", so that all of the associated conditions can be ruled out.
Simply saying, "that because his Palette Surgery has healed correctly and because he is eating well we can see him when he turns 5" simply IS NOT good enough. We should not have to wait 18 months after his surgery for more things to be done!!!!!
Is it because we live in a Regional Centre, I don't know, but it sure feels like it.
Hey I agree with you 100%!!!! Not sure of the why's but maybe we can work together to change this! At least with the help of this website we can read up on things and then we know what to ask! Good on you for knowing to push for a sleep study. I am not sure if I mentioned this in one of my other posts but at one stage we were advised to sedate Olivia every night to get her to tolerate the CPAP better. This just did not sit right with me and I have no idea why but I began to question it, research it and went for a second opinion. We were then advised to NEVER sedate a child with OSA! And after another sleep study we found that Olivia was no longer tolerating the CPAP because she was improving!!!!!!!The doctor we got a second opinion with was attending a conference where he was then going to bring up this situation with the other doctors. SO lets hope no one else gets this advice!
I live regional too, its a bloody pain in the butt being so far from the hospital
My biggest gripe being regional when my little girl was small was the local doctors having no idea what to do to help my girl. I found it easier to ring Perth to get information and support.
