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Re: Ian's sleep study

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DD w/ ds got her tonsils out August 2007. Her doc said her tonsils were EXTREMELY large, particularly in relation to her throat. The determination to remove the tonsils was primarily made because of a combination of very frequent episodes of strep throat plus eating issues (she has always had eating issues and would push on her throat when swallowing). She was also snoring and had brief episodes where her breathing would stop, but it didn't rise to the level of a sleep apnea diagnosis.

Kathi

From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Marsha ScheitlinSent: Monday, December 08, 2008 8:07 AMTo: DownSyndromeInfoExchange Subject: [DownSyndromeInfoExchange] Re: Ian's sleep study

To families who have had the tonsil surgery: did your Dr. say that your child's tonsils were enlarged? We just had an appt. with our ENT Dr. and I asked about tonsils. 's tonsils are not enlarged and the Dr. would rather not take them out if not necessary. We attempted a sleep study but terminated it due to the patient's ()distress. He was scared. He gets up every night at least once but usually goes back to sleep.Marsha> > We got the results of Ina's sleep study. He has mild to moderate > obstructive sleep apnea. He scored an 11 on their scale. He had 50 > episodes of apnea in an hour during his rem sleep. We were to see an > ENT on the 22nd of Jan but today the reschedule to the 11th of Dec. > Kind of nervous as to what the ENT will say. Not looking forward to > any surgery though.> > > > mama to 10 with ADHD inattentive and Wolfgang Ian 8 with DS, > repaired AVSD, hypothyroidism, obstructive sleep apnea and basically > an awesome kid!>

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I only agreed to having Larissa's tonsils removed after the doctor said they were so enlarged that in all likelihood they were blocking airway when she was sleeping. (Even then I tried an alternative for a couple of months to see if they would go down.) ENT didn't even require a sleep study - she believed me when I said Larissa would pause breathing, and then flip around. Also slept with her head thrown back.

Marsha, Larissa only really started sleeping totally through the night the last year or so. Still sometimes gets up at that dreaded 3 am time. Could just be our kiddos and their quirks.

Mindy

[DownSyndromeInfoExchange] Re: Ian's sleep study

To families who have had the tonsil surgery: did your Dr. say that your child's tonsils were enlarged? We just had an appt. with our ENT Dr. and I asked about tonsils. 's tonsils are not enlarged and the Dr. would rather not take them out if not necessary. We attempted a sleep study but terminated it due to the patient's ()distress. He was scared. He gets up every night at least once but usually goes back to sleep.Marsha> > We got the results of Ina's sleep study. He has mild to moderate > obstructive sleep apnea. He scored an 11 on their scale. He had 50 > episodes of apnea in an hour during his rem sleep. We were to see an > ENT on the 22nd of Jan but today the reschedule to the 11th of Dec. > Kind of nervous as to what the ENT will say. Not looking forward to > any surgery though.> > > > mama to 10 with ADHD inattentive and Wolfgang Ian 8 with DS, > repaired AVSD, hypothyroidism, obstructive sleep apnea and basically > an awesome kid!>

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Marsha,

My Addy had her tonsils and adenoids out

in April. She was on O2 24/7 before this surgery. Her tonsils weren’t

enlarged but her adenoids were. She is now completely off of O2 even at night,

her sats range from 97-100 during sleep. Before they were in the 80s.

Cammie Heflin

check out our

blog!

www.theheflinfamily.blogspot.com

From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Marsha Scheitlin

Sent: Monday, December 08, 2008

7:07 AM

To: DownSyndromeInfoExchange

Subject: [DownSyndromeInfoExchange]

Re: Ian's sleep study

To families who have had the tonsil surgery: did your

Dr. say that

your child's tonsils were enlarged? We just had an appt. with our

ENT Dr.

and I asked about tonsils. 's tonsils are not

enlarged and the Dr. would rather not take them out if not

necessary. We attempted a sleep study but terminated it due to the

patient's ()distress. He was scared. He gets up every night

at least once but usually goes back to sleep.

Marsha

>

> We got the results of Ina's sleep study. He has mild to

moderate

> obstructive sleep apnea. He scored an 11 on their scale. He had

50

> episodes of apnea in an hour during his rem sleep. We were to

see an

> ENT on the 22nd of Jan but today the reschedule to the 11th of

Dec.

> Kind of nervous as to what the ENT will say. Not looking

forward to

> any surgery though.

>

>

>

> mama to 10 with ADHD inattentive and Wolfgang Ian 8 with

DS,

> repaired AVSD, hypothyroidism, obstructive sleep apnea and

basically

> an awesome kid!

>

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3:00 am!!!! How did you know? (sounds familiar) used to try

to get in bed with us. All he's saying " I'm cold " . The ENT

suggested that I try tape-recording him at night.

Marsha

> >

> > We got the results of Ina's sleep study. He has mild to

> moderate

> > obstructive sleep apnea. He scored an 11 on their scale. He had

> 50

> > episodes of apnea in an hour during his rem sleep. We were to

> see an

> > ENT on the 22nd of Jan but today the reschedule to the 11th of

> Dec.

> > Kind of nervous as to what the ENT will say. Not looking

> forward to

> > any surgery though.

> >

> >

> >

> > mama to 10 with ADHD inattentive and Wolfgang Ian 8 with

> DS,

> > repaired AVSD, hypothyroidism, obstructive sleep apnea and

> basically

> > an awesome kid!

> >

>

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