RE: sleep apnea/adenoids/tonsils

[Guest guest]

Holly,

I am so sorry that you are going through this. I have no answers for you since

has not had this problem. I would call CF clinic about the not eating

thing, maybe they can give you some ideas to entice her to eat again. We had a

horrible time with and her eating before and after reflux surgery. Kids

are smart, if they realize that eating hurts, they don't want to do it.

good luck, I'll be thinking of you both.

Mom of 5 with CF and 10 weeks along

sleep apnea/adenoids/tonsils

Does anyone have any experience with sleep apnea? My daughter with cf is 22

months old. She has sleep apnea and the ENT thought that it would help to

take out her adenoids because they were rather large. Her tonsils are of

normal size so he left them alone. He removed her adenoids 2 weeks ago and

there is no improvement in her breathing what so ever. She also quit eating

since the surgery and has only been drinking milk, water, and juice. I

haven't weighed her but she has to be losing weight. We had a post operation

appointment today and all I did was waste my time. The only thing the doctor

said about her not eating was, " well, she should be eating by now. " And he

was still convinced that her apnea is caused by her nose and not her

mouth/tongue/tonsils or something else. He looked in her nose and said that

it was really congested with a lot of junk in there and that was probably

the problem. I said that she just caught a cold a few days ago and that is

usually the way it is when she is sick. So then he wanted to prescribe

antibiotics for 4 weeks! I asked him why he wanted to do that when he had

her on antibiotics right after the surgery as a preventative measure. He

said that he wanted to give her something stronger for a longer period of

time. I finally convinced him that it was just a cold and that she doesn't

need them. Then he told me to do saline rinses, give her nasonex again and

come back in 3 weeks. She was on nasonex before the surgery and it didn't

seem to be helping her then. What is the deal? Does he think that her sleep

apnea will be cured when her cold goes away and we come back it 3 weeks?? I

don't know what to do. Does anyone have any suggestions or kind words to

make me feel better. I am just so upset and frustrated with all these

doctors.

Holly

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[Guest guest]

Have they done a sleep study? Monitored her w/ all kinds of fun things while

she is sleeping? A few friends of mine as adults have had them done. Its

scary...........

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

It's not scary, you just feel like enstein. I wouldn't think they

could diagnose true sleep apnea without the sleep study.

Tina W., mother of , 18yo wcf

Re: sleep apnea/adenoids/tonsils

Have they done a sleep study? Monitored her w/ all kinds of fun things

while

she is sleeping? A few friends of mine as adults have had them done. Its

scary...........

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

She did have a sleep study done and they figured that she stopped breathing

on a average of 11 times an hour.......Holly

>

>Reply-To: cfparents

>To: " 'cfparents ' " <cfparents >

>Subject: RE: sleep apnea/adenoids/tonsils

>Date: Thu, 18 Dec 2003 13:56:51 -0600

>

>It's not scary, you just feel like enstein. I wouldn't think they

>could diagnose true sleep apnea without the sleep study.

>

>Tina W., mother of , 18yo wcf

>

> Re: sleep apnea/adenoids/tonsils

>

>

>Have they done a sleep study? Monitored her w/ all kinds of fun things

>while

>she is sleeping? A few friends of mine as adults have had them done. Its

>scary...........

>

>Rosemary in NY with 3 children (13, 11 and 7)

>with CF. I have a dog named TOBI and have

>coined the phrase " BREATHE DAMMIT "

>

>

>

[Guest guest]

Does she use a CPAP or BIPAP machine? I just got my BIPAP machine in July

and it has been wonderful. My husband and I both have machines and my

oldest daughter has sleep apnea too. I can't imagine trying to use a mask

if your nose is plugged. I woke up the other morning with a plugged nose

and I thought someone was trying to strangle me. I hope she has some relief

soon.

Tina W.

Re: sleep apnea/adenoids/tonsils

>

>

>Have they done a sleep study? Monitored her w/ all kinds of fun things

>while

>she is sleeping? A few friends of mine as adults have had them done. Its

>scary...........

>

>Rosemary in NY with 3 children (13, 11 and 7)

>with CF. I have a dog named TOBI and have

>coined the phrase " BREATHE DAMMIT "

>

>

>

[Guest guest]

In a message dated 12/17/2003 10:26:50 PM Central Standard Time,

hott_tommalle@... writes:

Holly

Is this a CF doctor you are dealing with? Have they checked her for polyps?

My Dad has sleep apnea they say it is caused from fatty glands in there throat

that causes them to stop breathing through the night. My Dad was tested and he

stopped 92 times in one night they told us he is surprised he has not had a

heart attack by now. He is now on a machine that pumps air in is throat so he

will not stop breathing. It works GREAT but he hates to wear it. It has done

wonders for him because he says now he feels more rested then he ever was

before. Before he would have to take a nape by noontime or he would not make it

through the rest of the day. My Dad is only 63 years old. I always thought that

sleep apnea was cause from being over weight. I can't understand how a 22 months

old could possible have sleep apnea. How did they test her for sleep apnea?

Deb A