Re: non compliant teenager

[Guest guest]

Hi Everyone...I really need some suggestions or help.I have a daughter with sma

type 2. She is 16yrs old. She had a sleep study approx. 3yrs ago, and a current

one a couple of months back. She was told she needed to wear a cpap mask (her

choice) nasal pillows or the nose mask. Her cpap machine is at a very low

setting of 7cm (she starts at 4cm and ramps to 7cm). She practically NEVER wears

the cpap. She recently went to a camp. The criteria was ventilator dependent or

cpap or bipap children. This is her 3rd year there. She wears the cpap all nite

long for camp, but when she comes home it basically stays packed away. She is

also non compliant with medications. She now has a UTI with E-COLI growing in

her urine, the doctor prescribed antibiotics for 7days. She refuses to open her

mouth to swallow the pill. She takes birth-control pills because she has a cyst

on her ovary, the doctor is trying to shrink. she maybe gets a week in then

refuses. She refuses to

clear her airway with Ippb machine & nbsp;,the pulmonologist prescribed xopenex

inhaler to be inhaled thru a spacer, then to use a device to blow into to clear

her airways, she refuses. My daughter is strong enough, if I was to put the mask

on before bedtime, she is able to remove with hands.

I was just wondering do I leave it be, or do something else? She has went to see

a sleep doctor, and he basically told her if you can wear you cpap at camp for 5

days, you can wear it at home. She agreed, but proceeded to tell him, but I just

dont like the blowing in my face.....I feel I have done so much for her all her

life, I have fought wars with hospitals and doctors and school administrations

etc... just to give her the best that she deserves. I was told by someone, maybe

she is doing this because this is all she can control right now. That this is

her power. Has any parent gone through this and does it stop?????

CHRIS

[Guest guest]

I'm really sorry you and your daughter are going through this. I

agree with Lori on the ventilator issues. I struggled with " to vent

or not to vent " as a teenager and my mother allowed me to make those

decisions. I later discovered that I had much more energy and less

depression when ventilated over night.

Unfortunately, messing with a UTI is asking for big trouble quick.

Some UTIs will go away if someone cuts out sugar, drinks tons of

water, and takes a cranberry supplement, but isn't reliable and takes

serious discipline. If a UTI goes untreated it will infect the

kidneys and may require IV antibiotics. Without treatment, one

eventually goes septic.

If your daughter's resistance is about hating pills, there are

antibiotics in pediatric suspension. If it's about not wanting to

take care of herself and being self-destructive, you might consider

taking her to a therapist who specializes in working with teenagers.

The things you describe remind me of when I was not sure I wanted to

be alive. Some of my anger and grief was about my disability, but

not as much as people would think. Teenagers carry a lot of baggage,

and if they don't have the skills to pack it well, it becomes quite a

burden.

All the best,

Alana