Hey.

We saw the Dr and they have referred Ben to the ENT clinic. They don't believe he has sleep apnea, but they do agree that the snoring isn't normal, and that his tonsils are very enlarged.  TBH, I don't think they had dealt with this much before, the first Dr was more concerned at looking up his nose than in his mouth, even though I had told her that he breathes through his mouth.  Guess I will have to wait for the ENT Dr to tell me more.

hello so glad u got the referral to ENT hope u dont have to wait to long b4 u get an app
 
sleep apnoea amongst children is rare, matthew is the 1st child our surgery have dealt with it sleep apnoea so im having to train them on the info
even hospitals dont have a clue when i say he has CSA.

good luck keep us posted wont u

love nat xx

I'm glad you got your referral to the ENT.  Keep us posted.

Nat, weird that your doctors feel that CSA in kids in rare and my doctor thinks it isn't.  I too thought it was rare based on everything I've read, but when I asked him about it at our last appointment, he said he sees lots of cases.  But then again, people bring their kids from all over to see him so he sees the more unusual cases.  Just thought that was interesting.

hi sara
what ur gp knows about CSA? wow all the gp's (8) we have seen at our surgery dont know nothing, when i go about his apnoeas they look at me with a blank stare lol must just be this rubbihs area lol

A&E never know what im on about and have to explain about y he has an wire attached to him when we make midnight dashes to hosp lol

GOSH r the only ones who know about matthew and understand more, my local hospital still think belive there is nothing wroing with mathew despite GOSH telling them overwise

Well, our ENT is the one who knows about it.  I doubt our regular pediatrican knows much about it.  I told him (the ENT) that Emerson still had pauses in his breathing despite having the T&A done.  He asked me if his chest and abdomen move during this time.  I said, "no, he takes a deep sigh then nothing - his body doesn't move at all."  He quickly replied, "Sounds like central sleep apnea."  That's when I started asking about how rare it is, etc.  He said it may be rare in the general population, but he sees it all the time.  This doctor is affiliated with Vanderbilt Children's Hospital in Nashville, TN.  This children's hospital is ranked in the top 10 for the country.  Our ENT is only 1 of 2 ENT's in the state who is board certified in PEDIATRIC ENT practice.  

We are fortunate to live so close to this wonderful hospital.  Emerson's main birth defect (the EA/TEF) happens about 1 in 4,000 live births.  But there are 5 types associated with it and he has the most rare form.  We think it happens about 1 in 1/2 million!!!  Long story, but our surgeon was able to detect the second part which makes it so rare pretty quickly and repair with minimal trouble.  However, we've made midnight runs to the hospital also and most of the ER nurses and doctors don't know anything about it.  I just tell them to send someone from surgery down to check him out.  They usually listen to me and end up asking me questions about it.  I ought to charge them a fee!!