[tri-med] Re: Sleep Apnea

My daughter Kayla had severe obstuctive sleep apnea and after years we found 
out that it was the phenobarbital that she was on made it 5 million times worse 
than what it probably would have been,
  any way
  We had all the sleep studies and tonsilectomy, adenoidectomy, a groove cut in 
the back of her throat, her uvual was trimmed and still no relief ( this was 
all before we knew about the phenobarb)
  they were fixing to do a trach and I begged them not to and went to another 
Dr.
  Who was very compassionate and said we needed to try a nasal trumpet( all it 
is, is a nasal airway tube that has a flared out trumpet shaped end.
  So he put her in the hospital and we inserted the tumpet lubed up with 
zylocaine to help numb her nose, into her nose and it worked !!!!!!!!!!!
  It would lay on the back of her tounge and created an opened airway!!
  It was a God send!! I know that she would have not lasted very long with out 
that nasal trumpet.   Any way 3 years later her new neurologist changed her 
seizure med and when she started coming off the phenobarbital the apnea started 
going away!!!
  Which is great but the phenobarbital also kept her  muscles loose and limber 
( again we did not know this at the time )  and she started loosing function of 
her hands and her muscles started getting tight and we finally figured that out 
3 years later so we traded one bad thing for another!!!.
  You can email me if you need further details about the nasal trumpet.
  Cartr229@xxxxxxxxx
  Cindy mom to Kayla 14-  and Rebecca -3 both partial T13
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
> --^^---------------------------------------------------------------
> 





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

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