Hi Everyone,

We had the 3rd sleep study last night (1st since adenoid removal).  I think everything went well, as well as could be expected anyway.  Chris was wired up by 10:30, asleep very soon after that and moved constantly (or so it seemed) until 12:30am and beyond.  Because they could not use tape (adhesive allergies) the pulse-ox kept coming off and had to be replaced many times during the night.  Chris was doing the big deep sighing breath and then not breathing again, so I hope to find out what she is doing with that.

I asked the sleep tec if he thought we would be visiting again, and he said he did not think so---perhaps she passed this time, but he agreed that she was a very lively sleeper and kept him busy.  I asked the tec if they did c-pap titrations for kids and he said that they did not do them very often at all.  He say they have to be pretty severe before the come back for c-pap.  

I don't find that information very encouraging.... I am going to call the sleep center at the childrens hospital and get an appointment for their dr to give her opinoin about the study results.  I am thinking that the neurologist is undertreating kids (he is involved in the sleep lab where we were sent, and I think he interprets all the studies for that lab), I think he is one of the only drs sending kids there...........I want a second opinoin before we go back to the neurologist in Feb, if he concurs we keep him, if he doesn't he isn't going to be treating Chris's apnea.

Sorry if this is kind of wandering and not making so much sense...I have learned that at sleep tests Mom's don't get to sleep.

Susan

Hi Susan!

It all makes perfect sense.  I applaud you for being so on top of this.  I think what you are doing is excellent.  It sounds like the sleep lab has plenty good data.  A second opinion is always called for, especially in this case.  You are right; you can have the lab send the results over to Children’s for their review and consultation.  You can also pick the results up yourself.  Despite what offices try to tell us, we have a legal right to have those records, they do not have to be transferred only to another doctor.

Keep up with the updates!!

Vicki


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That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

It drives me mad sometimes that we have to fight all the time! Keep going and dont let them get you down!

I would be interested in what the big deep breaths your daughter is doing is diagnosed as ( central or not) as my son does the same?