I'm sorry to hear about your daughter's situation. It's obvious that her condition is very complicated and I can't even begin to give you any useful suggestions. I recommend that you speak up and find a doctor that will listen to you. Unfortunately, it sounds like you have limited options with doctors in your state.
The Doctors are unsure of what is causing her episodes. She has nights where she has 20+ alarms and drops her O2 levels as low as the 70s but when I take her into the local pediatricians office they ask me if I cleaned her Nose, Or they tell me she is just too old to be doing this now and that maybe I don't know how to read the machine. The Pulmonary specialist has talked about putting her on a medication that hasn't been used since the 70s on children. He told me it has a fine line between effective and toxic. The name of it starts with a Th...... he also talked about putting a central line into her arm and then putting a mask on her and introducing Carbon Dioxide to see how she responds. I am a little unsure as to these proceedures and I am extremely irritated that The doctor doesn't call me and seems to forget all about her if she isn't sitting in front of him. I am ignored for WEEKS by her doctors. I get the feeling that they are either waiting for it to just stop or they are hoping I just go away. Recently she had a weird episode that appeared like a Seizure to me. When I told the pediatrician she told me it would be helpful if I had gotten it on video and then she dismissed it. My daughter also has some other weird symptoms that the doctors just dismiss and act like they don't believe me. Since birth when presented with a stressful situation she just shuts down and falls asleep. Stressful situation being..... her first bath ( I have that one on video), when a cathater was put in. and when they drew her blood. (They put the needle into her arm she screamed and then turns her head and appeared to have fallen asleep while they are fishing around in her arm for a vein.) She also has frequent infections. ie; ear infection, bladder infection, staph skin infection. She is gluten intolerant, and has issues with antibiotics. These are all symptoms that the doctors ignore and tell me that they are isolated regardless of the fact that we can't seem to go more then a few weeks without an infection We are really limited to our doctor choices and I have to fly into the ONE and only pediatric pulmonary spectialist in our whole state. I am so fustrated and really want to switch doctors but I don't know how to do this without getting a referal from the doctor I want to leave. I am wondering what is the normal procedure for a infant with CSA. Should we have oxygen at our home. I have asked my doctors for it but I was told that her lungs would get lazy and she wouldn't breath right. I am concerned that if she continues on this path that she will get brain damage from her episodes of low oxygen. I want to know if my doctors are just putting us off and if I should try to get a new doctor. And how do you go about getting a doctor out of the state you are living and have State medicaid.