RE: Tonsils & Adenoids

[Guest guest]

I've fallen way behind on emails, and there's no way I'm going to catch up on this sequence -- but just a quick comment on the issue...

My daughter w/DS had large (but not alarmingly so) tonsils, and no diagnosed sleep issues (although I knew how restlessly and somewhat loudly she slept, and that she always seemed tired) -- no one even thought a sleep study was warranted. I pushed to have a T & A done because of her chronic congestion, which would basically span from Sept or Oct through March or April. ENT after ENT told me that she didn't need the surgery, as did my pediatrician, and really made me feel like I was "knife-happy". Then I visited an ENT at CT Children's Medical Center (which deals extensively with kids with DS), and they understood the frequent benefits of a T & A for kids with DS, even if the symptoms don't always directly point to it. The results were nothing less than astounding. The ENT, Dr. Schoem (whom I highly recommend) told me that her pharynx was something like 80% (90%?)

blocked (there's "no way" she was breathing correctly at night). Although her congestion has markedly improved (in terms of both severity and duration), the most dramatic -- and unexpected -- result is that she stopped wetting her bed! Apparently, she was waking frequently, which would impair her body's ability to "store" urine. Of course, this means she was also not getting high-quality sleep as well. She's so much more awake/alert now.

It's definitely worth the couple of days of discomfort. I think that often we have to be very agressive medically with our kids, because everything is alread so hard for them that every little "boost" can really be life-changing.

Good luck!

Sheryl Knapp

[Guest guest]

I'm glad you just made that point.... it reminded me that Dr. Schoem said that with kids with DS he does the surgery differently -- apparently, due to anatomical issues, if you remove the entire adenoid with kids with DS it can create complications with eathing/drinking (something about food/drink ingested getting into the nasal cavities...). He said he was removing only a portion of the adenoid, so that it "aligned" with the pharynx(?).

You could also have your ENT call someone who's more experienced -- Dr. Schoem, I know, is very involved in the DS community and would be happy to explain the differences.

Sheryl

To: Multiples-DS Sent: Wednesday, December 31, 2008 9:15:12 AMSubject: Re: Tonsils & Adenoids

Maggie,

I think the experience wiwth DS is important, I was refered to a few ENT and I

asked about their experience with DS, it brings a bunch of common issues

and if the PED ENT hasn't seen it before they may not be best for your boys?

I was going an hour to Orlando to the Nemours children's clinic since they see

so many children with special needs.

Do you have a local DS chapter or a DS clinic, Florida has one in ville

and we drive 2 hrs there for their developemental PED for Zack's ADHD, he see's

only DS children and those with dual diagnosis how relevant is that? I am sure

in your area there is a doctor with the needed experience. Good Luck. Irene

Tonsils & Adenoids

Hi all!Just wondering if any of your children had to have their t & a removed?'s are very large and cause quite a bit of snoring and he is aloud mouth breather, (apparently there has been some connection withADHD and snoring) His peds have not mentioned it but I doubt they haveeven noticed.amom to Meg14,Jack12, Lucy7,( ds) & 3-- Gayla

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[Guest guest]

yes, our ENT sees all the kids with DS in our area. I think that is an important key to the physician understanding our children.Maggie,I think the experience wiwth DS is important, I was refered to a few ENT and Iasked about their experience with DS, it brings a bunch of common issuesand if the PED ENT hasn't seen it before they may not be best for your boys?I was going an hour to Orlando to the Nemours children's clinic since they seeso many children with special needs.Do you have a local DS chapter or a DS clinic, Florida has one in villeand we drive 2 hrs there for their developemental PED for Zack's ADHD, he see'sonly DS children and those with dual diagnosis how relevant is that? I am surein your area there is a doctor with the needed experience. Good Luck. Irene Tonsils & AdenoidsHi all!Just wondering if any of your children had to have their t & a removed?'s are very large and cause quite a bit of snoring and he is aloud mouth breather, (apparently there has been some connection withADHD and snoring) His peds have not mentioned it but I doubt they haveeven noticed.amom to Meg14,Jack12, Lucy7,( ds) & 3-- GaylaListen to 350+ music, sports, news radio stations – including songs for the holidays – FREE while you browse. Start Listening Now!__________ Information from ESET NOD32 Antivirus, version of virus signature database 3726 (20081231) __________The message was checked by ESET NOD32 Antivirus.http://www.eset.com

[Guest guest]

I have sleep apnea. I highly recommend flushing sinus passages

nightly. I do it. It helps me breathe through my nose at night with my bi-pap

machine (which I hate), but it’s better than killing off the rest of my brain

cells! I think the flushing has kept me a lot healthier as well. My ENT

suggested it after a really bad case of sinusitis. I haven’t been getting

sick.

From:

Multiples-DS [mailto:Multiples-DS ] On Behalf

Of Margaret M Hagan

Sent: Tuesday, December 30, 2008 4:23 PM

To: Multiples-DS

Subject: Re: Tonsils & Adenoids

Al thanks for

the information and always being a voice of reason for me. Thanks to

all of you for sharing so much of your experience. As far as the room

goes, I know there is no fresh air return in the bedroom.

Honestly, I never considered that as part of the breathing/respiratory problem

and it's soooo obvious now that you say it. I've been checking into air

ventilation systems for our entire 2nd floor (3 bedrooms) because all of the

rooms are oppresively hot during the summer. But, only the newly

constructed room is that way all of the time. The heat is baseboard (hot

air). It's always stagnant and hot in there except when I can open the

windows a bit in Spring and Fall. I'll have to look further into

this. I do know it's " clean' of construction dust though as I did

the wet-wipe cleaning myself multiple times before the boys were brought home

from the hospital and since throughout the house (had lead dust problems in

" this old house " so I know it's clean b/c I had to get the clean bill

of health from our state health department).

After this

string of emails, I'm compelled to find and get the guys to an ENT with

experience with OSA (had to look that up) specifically in children with

DS. When I first brought them to our current ENT (at my request despite

my Pedi thinking that it wasn't necessary), it seemed so obvious

to me that their large tonsils were causing or at least complicating their

breathing problems. When our current ENT poo-pooed the idea, I

figured he knew best. Now, I'm thinking that's really not so. Al,

your statement about the SAT scores is frghtening and also incredibly

logical. So, where/how do I find an ENT with the appropriate

experience???

BTW - My

husband, w/o DS, has a small oral cavity, VERY large tonsils, low oral muscle

tone AND diagnosed sleep apnea which he uses a machine for. He's very big

chested (not belly but chest) which I'm told is common in people with

apnea. My boys have that same big chested physique. Interesting!

xo maggie

Olivia '01

and & '05 (IDs w/ DS)

To: Multiples-DS

Sent: Tuesday, December 30, 2008 12:34:08 PM

Subject: Re: Tonsils & Adenoids

My turn. The voice of experience (or not) is back...

Sleep apnea... I don't think that most general practictioners and very many

pediatricians know much about it. I was told by a pulmonologist that the

up-sleeping position is a bench mark for OSA and that 90 percent of the people

she finds with it have Down syndrome. Will and both have OSA, more

than Will. It scares the hell out of me that someone's SAT rate can drop to 60

or 70 percent because prolonged periods at that level can do serious brain and

developmental damage. That's probably why the brain signals the sleeper to sit

up to open the airway.

Jodie, the nose flush sounds cool and it's something I can prepare at home.

Saline water and antibiotic ointment. I'm going to run that by our ENT.

Even though they are now 18, Will and still have narrow ear canals, which

besides wax can harbor bacteria and viruses. (Warm and dark, you know.) They

see the ENT every 3 months at our Kaiser Permanente clinic. Both have had ear

tubes inserted more than once. Will's ear canals are narrower and he is more

prone to infections. We give him Augmentin--amoxicil in with an adjuvant,

potassium clavulate--which is a lot cheaper than it used to be because

it's now available in generic formulations. Amoxicillin alone did not work, but

it is still effective against strep throat. Azythromicin is really cool--six

doses and you're done--but it may be more expensive even though it's availaible

generically.

Maggie, I assume that your baby's-room addition is heated with hot air.

Otherwise, much of what I say is useless. If your builder had an HVAC

subcontractor, he or she should conduct an air-pressure check on the new

registers so that the air flow is the same in all of the rooms. Also, there

should be an air-flow return for that room; if not, the room is below code and

you have grounds for a complaint. Any HVAC company that wants to protect its

reputation would install both an air supply and an air return. Imagine a cop

going to work without his radio. Also, if you haven't done this, vacuum the

room along the walls amd ceiling, and especially the seams at the edges, to

take out any remainder of construction dust. Not every contractor is scrupulous

about removing shavings, dirt, cigarette butts and what-have-you between the

studs before putting up the walls. If the walls are tightly sealed as you say,

this junk should not be a problem, so look for leaks. Include any electrical

outlets--ceiling, too--and around the registers themselves. Consider an

additional coat of paint. All of what I'm saying is based on learning the hard

way--we have done three renovations and additions. Once, what we had thought to

be colds turned out to be allergies to fine plaster dust.

Oh, regarding speculation about mirror twins. Twenty-five percent of identical

twins are mirror twins. Mine are, too. See Wikipedia. Penny heard from our

sons' cardiologist that true mirror twins have their organs on opposite sides.

Wonder how often THAT happens...

And another nugget: Persons with Down syndrome have a cancer rate lower than

that of the general population. The " why " is under study.

I've talked long enough.

Al Veerhoff, Kensington, MD

Re: Tonsils & Adenoids

Here's our story.For a little

history, both my daughters with down syndrome have the AVCanal heart defect,

and Mercede had problems with hypertension also. Cheyenne was all over the

place when she slept. I would find her under the bed alot. She also had thick

green drainage from her nose all the time. She had a T & A when she was two

years old. Took her two weeks before she would drink out of a cup after that.

She would only take liquids off a spoon, and that was frustrating. But the

drainage becames clear and she started sleeping well. I can't remember

exactly how old Mercede was but I think she was about 6 years old when she had

her T & A. Mercede had constant ear infections and three sets of tubes. She

went home the same day as her T & A and even choose to stop by Mc D's when

she left. She had no problems with the surgery at all. When Cheyenne was 12, I

noticed that she started sleeping with her head between her knees. She would be

in this folded over position every morning. I talked to my dr about it being a

sign of sleep apnea. My doctor though I was reading way too much into it. Then

the teacher starts talking about how Cheyenne is regressing at school. She is

unable to keep up and is tired and she can't get much from her. In the past her

teachers had all raved about how well she tried to study to keep up. I finally

convinced my doctor to do a sleep study. The sleep study showed she had severe

obstructive sleep apnea. I don't have her results out but I know she stopped

breating over 400 times during the night. Her Sats were in the 60's and 70's.

They tried a cpap sleep study and decided to go with a bi-pap instead. Her pressures

were so high on it that she could nto tolerate it. I put it on and tried it out

and there is no way I could stand it. I took her to an ENT whom sent her for an

MRI. The MRI showed her tongue was falling back and blocking her airway (when

on her back), they said her lingual tonsil (it's located on the back of the

tongue) was abnormally huge. They shrunk it down in size. She still has

severe OSA, but can now have lower pressures on the bi-pap then before.

They talked about doing a trach on her but I said no. I have a friends son whom

has been thru the same thing and she told me not to do it until it is life

threatning. But it is really sad because I can see how this has affected

her mentally. She is not the same child she was a few years ago. Mercede also

has a bi-pap machine but will not use it for the life of her. Her OSA is not as

bad as Cheyennes, we just pray that it will not affect their hearts.

Good luck with your decisions.

On Mon, Dec 29, 2008 at 4:33 PM, igercak <igercakcfl (DOT) rr.com>

wrote:

You have gotten alot of replies

already but this is what our experience was, Zack had about 5 sets of tubes

when his ENT reccommended removing the adenoids and that change everything he

rarely got the long lasting ear,sinus colds and grew out of his allergies and

doesn't even see his ENT anymore. She released him after 4 years without

any colds!! We live in Central Florida so the weather is great and he isn't

exposed to real cold? His tonsols were never enlarged so he was never a

candidate for that surgery. He use to prop himself up at night and we

would find him upright or leaning on something, that has stopped too. He

had a sleep study no findings,he sleeps strangely; moves around and tosses

alot, but I believe that has to do with his ADHD meds more than anything else,

on weekends and all summer he sleeps better, but he also gets much more

exercise and stays up later and thus is more tired? Anyway I lived

through the years of ear infections, colds, steroids shots etc then suddenly he

wa HEALTHY amd he hasn't looked back. Recently the rest of us had a cold

circulating and the only 1 who didn't get it was Zack? Good luck.

Irene

Tonsils & Adenoids

Hi all!

Just wondering if any of your children had to have their t & a removed?

's are very large and cause quite a bit of snoring and he is a

loud mouth breather, (apparently there has been some connection with

ADHD and snoring) His peds have not mentioned it but I doubt they have

even noticed.

a

mom to Meg14,Jack12, Lucy7,( ds) & 3

--

Gayla

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radio stations – including songs for the holidays – FREE while you browse. Start Listening Now!

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