Re: Sleep Study Came Back Less Than Ideal

[Guest guest]

The snoring, can be caused by tonsils, weather they are large or not,and wether you have had problems with them or not.... It is recommended to take out the tonsils if lots of snoring and difficulty breathing...

, Hailees mom

[Guest guest]

I'm sorry that Abigail's sleep study did not come back as well as you

would have wanted.

I can't remember where you are located, but I think you are in my

general vicinity (Baltimore). My son sees an absolutely WONDERFUL

pulmonologist who specializes in sleep disorders. She is at s

Hopkins if that is close to you.

She is sending us for our first sleep study...it isn't until March

29th though so I don't have any experience in that department yet.

If you are interested in the pulm's name/info email me privately.

Take care

Willow

Mother to Isaiah 2, GERD, EE/EG/EC, severe gastroparesis, hiatal

hernia, suspected Dysautonomia, seizures. Neocate 1+ only. Failed

food trials: 6/04 watermelon, 9/04 pears, 12/04 green beans, and 2/04

potato. http://www.caringbridge.org/md/isaiah

[Guest guest]

This is just our experience. Sheldon's sleep study last July

showed something like 192 arousals because of sleep apnea. His sleep

apnea was really bad. He didn't seem able to breath once he was in a

deep sleep. We had his tonsils removed in Sept. and I cannot believe

the difference it made in his sleep. It was really amazing. He still

has some apnea because of low muscle tone but it's nothing like it

was, it was so bad that we had him on blow-by oxygen over night before

the surgery and haven't needed it since then.

I have to mention that the recovery from the tonsillectomy was

not fun. It was really hard and he seemed to be in a lot of pain. He

was in the hospital for 2 1/2 days after the surgery and really

couldn't eat much for a couple of weeks. However, we believe that it

was worth it in his case.

I of course have no idea if Abigail has the same problem, I just

wanted to let you know what we've been through. We've never seen a

pulmonologist.

Hope you get this figured out and things improve.

Ok, Abigail's sleep study came back.

It showed periords of soring,

low oxygen levels, muscle weakness, a couple other things that I

am

too tired to remember right now. I heard all of this from a

physician over the phone, and being a visual learner information

sticks most acurately if I read it.

The recomendation from the specialist who deals with sleep

abnormalities said we should send her to an ENT and possibly have

her tonsils removed. I was shocked because she does not and never

has had enlarged tonsils. Even during illness. Abigail's primary

team is sending us to a pulmonologist. They argree that it is not

Abigail's tonsils.

#1 Who among us has been to a pulmonologist?

#2 What was it like?

#3 In your experience, what can be done to offset nightly episodes

like this?

I know, it should not be taken as medical advice. Rather I am

looking for the human experience. I have done research on the web

already. I however am looking for the view from a patient's stand

point, or from the parent of a patient.

Thanks for all your help. Sorry about the typos...I've had way too

much coffee.

Myst

Please contact mito-owner with any problems or

questions.

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