[tri-med] Re: Sleep Apnea

Mitchell has sleep apnea but his is central. He is CPAP though through his
trach. I guess I would want to know what was causing the obstructive apnea?
We found that Mitchell had/has tracheamalacia and this was causing
obstructive issues awake and asleep...he is now trached and just has apnea
at night but we now know that it is central. (He still needs the trach
though) So, what is causing it? Sometimes a big tongue, tonsil/adnoid
problems, or the tracheamalacia (like Mitchell), Maybe a pulmunologist would
have an idea or could give her a bronchealscope to make sure that the
treachea is the way it is suppose to be? I guess these are just things we
looked at when Mitchell was born-unfortunately he had both obstructive and
central and now just the central. She can e-mail me if she'd like. Like I
said, this is our experience with sleep apnea.
Katie 
Mom to Mitchell mosaic t-13  12 months!
Www.caringbridge.org/mn/mitchelljohnceagg

On 12/21/05 4:22 PM, "TRIER9@xxxxxxx" <TRIER9@xxxxxxx> wrote:

> This is a letter I cut/pasted from the Trisomy 9 list I belong to.  Thought
> it would be a good idea to pass it on to this list for idea's. You guys are
> always good at those!
> Thanks so much, Laurie
>> Do any of your children have issues with sleep apnea?  Brianna has severe
>> obstructive sleep apnea. We tried another sleep study last night, but she
>> cannot tolerate the mask/air pillows.  She stayed awake until
>> 4a.m.........even
>> after taking a sleeping pill at midnight.
>> The CPAP machine makes her vomit.  We have tried different masks and even
>> added humidity to her machine, but she still gets very sick. She has lost
>> close 
>> to 20lbs and we are very worried about her health.
>> She stops breathing 57 times a minute. Sometimes not breathing for 20
>> seconds at a time.
>> I kept putting off writing this letter because I didn't want to worry anyone
>> about their child. Brianna has other issues as well and we are very worried.
>>  I just don't feel comfortable sharing them right now.
>> Hope I can find some answers soon.  I am homeschooling her until we get some
>> answers.
>> A few doctors have indicated to me that 'she is supposed to deteriorate
>> anyway.'
>> Just INFURIATES me to no end!
>> 
>> 
>> Laurie
>> Mom to Brianna, age 16w/trisomy 9p, Brandon, age 13, Marissa, age 7 and
>> baby-Kayla, age 4 months w/trisomy 21
>> --^^---------------------------------------------------------------
>> 
> 
> 
> 
> 
> 
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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