Christina (7) is getting her mask and cpap on monday.  I called the neuro for the third time this week and they finally are sending her over to get it fitted.  I know she has not waited very long, but any wait is too long when I think about the damage caused by low oxygen and lack of good sleep.  I have talked to the DME and they said Chris was to get a standard cpap with a setting of 8.  I am very happy she is getting the cpap, but would like a titration to make sure the setting is correct.  I can deal with a setting of 8 as a getting used to the machine setting, but as soon as she can wear the mask for an extended time I want a proper titration.

I think I am in the market for a new neuro, when I called to ask if they had made a referal to the children's hospital sleep lab, they said they were sending her somewhere else (that does not do titrations....machines only), and the receptionist said that they deal with the seizure patients first and then the phone calls.  I told her that if they did not get Chris on cpap that they would have another seizure patient.  I don't think they realize how dangerous this can be to a small child and how much I am willing to do to get her treated.  I'll let you know how it goes.

Susanne

If you need a CPAP, then you need a titration.  The norm in kids is to send them home with a machine for a while before the titration to get used to it on a relatively low pressure...If they get blown away with high pressures the first time they put one on, AND they are in the sleep lab(strange environment), success rates drop.  I'm a bit confused when you say that the doc said they are sending her to someone who does not do titrations.  That seems really odd to me, in that I dont know who he would be talking about.  Were they just referring to the DME?  Good luck~keep us posted.

Hi Tim,

I don't understand our neuro.  I don't know why he thinks he is qualified to treat apnea.  I don't know why he won't send Chris to the childrens sleep lab.   He is sending her to a DME for the cpap.  Thank you for telling me that kids usually have a period of adjustment before they do the titration.  I will get her the cpap on monday.  The DME seems very interested in getting her the proper equipment and making things easier for her (she has already named her mask, and is asking can I get my mask yet???)

I have officially decided that the neuro will not treat Chris for apnea (or possibly for anything).  When I called them on friday I was told that they take care of seizure patients first (a good idea) and then make phone calls (I rarely get a call back when I ask a question).  I told them that if they did not get Chris a cpap that she would be a seizure patient as well.....79% oxygen is not a good thing and is damaging to children.  Last night I was thinking about the reality of the situation, if she had a problem and I called them, I might not get an answer for days.....if they even knew what to do.  The DME is near the sleep lab, so I am going to get all her results and give them to our pcp.  He knows about the problems I am having with the neuro and said that he would refer her to the childrens sleep lab.  

Susanne