[tri-med] Re: laryngomalcia/Apnea

I'm a day behind on email, but hopefully our experience will still help!

Keren was diagnosed with severe obstructive apnea when she was four 
months old (and she'd had it for longer than that; we'd just been 
living with it!).  Part of the problem was very tiny passageways, but 
she also had a small lower jaw which caused her tongue to be bunched up 
in her throat, and of course she had low muscle tone.  A jaw 
distraction at five months helped the tongue problem and breathing 
incredibly, but she still has sleep apnea and has been on a cpap since 
then (she's 2 1/2 years old now).  Recently (since all her teeth have 
come in and she's not as congested from teething) she's been taking all 
of her naps without the cpap and she's doing great--practically silent 
slumber!  I think there's a good chance she'll outgrow the need for the 
cpap.

I can imagine being shocked by the doctor's statement!!!  I never 
though of the cpap as something invasive or harming life quality!  I 
mean, my dad has been using a sleep apnea machine for about five years 
now and my grandmother just got one this year.  For both of them, it's 
incredibly improved their sleep quality, among other things!

I don't think size would be an issue.  Keren was just a bit of a thing 
when she started on it, and since she's known it all of her life, she's 
always accepted it without complaint.  I know some of the kids on the 
list won't tolerate it, but that's to be expected.  There are many 
personalities among the kids here :) .  I think it's definitely worth a 
try!

Hope you get some good answers soon!

Loren (wife to Kraig, mom to Keren, T18, two years old (9/27/02), and 
new little one due 7/13/05)
Southeast Michigan
http://webpages.eng.wayne.edu/~ad6075


On Tuesday, June 21, 2005, at 02:00 PM, Barbara Farlow wrote:

> She said we could confirm
> with sleep study, but if so, it may require a Cpap, and then to quote 
> " we
> really have to discuss how far we are going to go with poor Annie, if 
> you
> know what I mean" I am quite shocked by this statement.   I believe I 
> have
> read that Apnea (if she has it at all) lessens with age. Is this true? 
> Annie
> does not have holopresencephaly. ( an aggravating factor, I believe) 
> The Rt
> suggested that these dsats may even be related to her tongue, or even 
> the
> laryngomalacia.   Do you very experience folks have some comments or
> suggestions about this or Dr. comments?   Truly, without the collective
> knowledge that I have acquired through all of you, I am sure our Sweet 
> girl
> would not be here. Thankyou from the bottom of my heart Barb Baby Annie
> 05/25/05 t13

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