Adnotonsilectomy (sp?) feedback - For K

March 11, 2006

Hi Lesley,

I think it was you who had asked for feedback regarding the outcome of

having her tonsils and adenoids out back in January? I am pretty

sure it is who has sleep problems? Apnoea? If not, ignore this and

hopefully whoever asked for feedback will be reading.

If you recall, was having lots of problems with sleep due to nasal

blockage for around 3 years and it was particularly bad for one year prior

to surgery. She was regularly waking up distressed at odd times of night

due to severe nasal blockage, and then the CHARGE thing of partying would

often kick in so she was constantly exhausted (so was I).

I have waited this long to reply as she has had colds that have masked the

outcome. I have to say that her breathing has improved so dramatically it

is barely audible while asleep or awake (providing no colds). Previously,

her breathing was so laboured we could hear her approaching and at night, we

could hear her from the far end of our house. Now it is so quiet that Simon

and I have individually been guilty of giving her a panic-stricken gentle

shake in her sleep to just check that she had not stopped breathing. What

this means is that her quality of sleep is so much improved that if the

CHARGE parties should kick in, she has generally had relatively rested sleep

so she is now not at all distressed when she wakes up at night (I regret I

cannot say " she is not at all noisy " ! The laughter unfortunately still

keeps me awake). She also has a tendency not to wake up every night as she

used to so I can at least look forward to half a week of non-disturbed

sleep. We have not yet had the luxury of week-long non-disturbance but it

is all CHARGE-sleep, not blocked airways or apnoea.

The other lovely thing is the dreaded snots (sorry if anyone is mid-food).

Soooo glad to say that providing no cold, the everpresent choanal atresia

nose appears to have mostly gone since surgery. A dry nose is a welcome

nose in this house. Of course when a cold appears, there are the

characteristic thick green/yellow infected sinus discharges, but these are

not as long-lived as they used to be (last one lasted around 3 weeks).

Unfortunately, these were also accompanied with night time blockage and

nightly waking and much sleep disturbance but 3 weeks is nothing compared to

3 years.

We have just had the results of the sleep study (which the ENT guy decided

to ignore in deciding about surgery) and they do acknowledge that despite

how well she did overall that night, there is a possibility of obstructive

apnoea and laboured breathing. It appears her sats had dropped to 85 on one

reading.

All in all, we think the surgery was a great success. On removal of the

tonsils, the surgeon informed me that they were " moderatel enlarged " .

Perhaps combined with the choanal atresia, the impact was more profound, but

there did not seem to be anything moderate about the way she was breathing,

day or night. She was very obviously struggling for breath and most of the

waking times she appeared to be snoring as much as in her sleep.

Presented with the same situation, we would go for the surgery all over

again. It has made a HUGE difference to 's breathing and nasal

discharge and of course, to her sleep. Hopefully, she will now rechannel

her energies to growing!

Flo

March 12, 2006

Hi Flo,

Thanks so much for posting about this! It comes at just the right time for

us, as is just now getting over a severe case of tonsillitis this past

week. It started out as a sinus infection, but then turned into

tonsillitis--high fever for five days, she wouldn't eat, but we were lucky

enough that she would take enough liquids to keep herself hydrated. That's the

worst I've ever seen her feel--she's rebounded from surgeries quicker than

this--which makes me want to raise the case even more of having her tonsils and

adenoids removed.

I'm planning to make an appointment with her ENT to get in as soon as we can

to discuss this. We have varying opinions on this from all her medical

providers, but 5-2 say that her tonsils are enlarged enough even when she's well

to be causing breathing problems at night and recurrent sinus infections. I

guess we're just at the point where we see no harm in removing them to see if it

might help sleep issues, sinus problems, etc. Not that I'm eager for to

go through another surgery, but if it helps lessen some of these problems, then

what have we got to lose?

I'm wondering, too, if should have a sleep study. She's a consistent

waker at night too (I think you and I have talked about the fun sleep problems

before!), and I'm wondering if she has some apnea going on. Sometimes if she's

sleeping and I lay down by her for a few minutes, I can actually spot times

where she stops breathing. I think that may be another factor. Did 's

doctors recommend anything to help the apnea?

OK, I'm rambling now so I'll quit, but I do appreciate the info on .

Glad you are getting more sleep now--hopefully it will get even better in the

future! Wish we lived closer--we'd put and in the same room

together and let them party all night if they wanted! :-)

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March 12, 2006

Hi Flo,

Thanks so much for posting about this! It comes at just the right time for

us, as is just now getting over a severe case of tonsillitis this past

week. It started out as a sinus infection, but then turned into

tonsillitis--high fever for five days, she wouldn't eat, but we were lucky

enough that she would take enough liquids to keep herself hydrated. That's the

worst I've ever seen her feel--she's rebounded from surgeries quicker than

this--which makes me want to raise the case even more of having her tonsils and

adenoids removed.

I'm planning to make an appointment with her ENT to get in as soon as we can

to discuss this. We have varying opinions on this from all her medical

providers, but 5-2 say that her tonsils are enlarged enough even when she's well

to be causing breathing problems at night and recurrent sinus infections. I

guess we're just at the point where we see no harm in removing them to see if it

might help sleep issues, sinus problems, etc. Not that I'm eager for to

go through another surgery, but if it helps lessen some of these problems, then

what have we got to lose?

I'm wondering, too, if should have a sleep study. She's a consistent

waker at night too (I think you and I have talked about the fun sleep problems

before!), and I'm wondering if she has some apnea going on. Sometimes if she's

sleeping and I lay down by her for a few minutes, I can actually spot times

where she stops breathing. I think that may be another factor. Did 's

doctors recommend anything to help the apnea?

OK, I'm rambling now so I'll quit, but I do appreciate the info on .

Glad you are getting more sleep now--hopefully it will get even better in the

future! Wish we lived closer--we'd put and in the same room

together and let them party all night if they wanted! :-)

---------------------------------

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March 12, 2006

Hi Flo,

Thanks so much for posting about this! It comes at just the right time for

us, as is just now getting over a severe case of tonsillitis this past

week. It started out as a sinus infection, but then turned into

tonsillitis--high fever for five days, she wouldn't eat, but we were lucky

enough that she would take enough liquids to keep herself hydrated. That's the

worst I've ever seen her feel--she's rebounded from surgeries quicker than

this--which makes me want to raise the case even more of having her tonsils and

adenoids removed.

I'm planning to make an appointment with her ENT to get in as soon as we can

to discuss this. We have varying opinions on this from all her medical

providers, but 5-2 say that her tonsils are enlarged enough even when she's well

to be causing breathing problems at night and recurrent sinus infections. I

guess we're just at the point where we see no harm in removing them to see if it

might help sleep issues, sinus problems, etc. Not that I'm eager for to

go through another surgery, but if it helps lessen some of these problems, then

what have we got to lose?

I'm wondering, too, if should have a sleep study. She's a consistent

waker at night too (I think you and I have talked about the fun sleep problems

before!), and I'm wondering if she has some apnea going on. Sometimes if she's

sleeping and I lay down by her for a few minutes, I can actually spot times

where she stops breathing. I think that may be another factor. Did 's

doctors recommend anything to help the apnea?

OK, I'm rambling now so I'll quit, but I do appreciate the info on .

Glad you are getting more sleep now--hopefully it will get even better in the

future! Wish we lived closer--we'd put and in the same room

together and let them party all night if they wanted! :-)

---------------------------------

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March 15, 2006

Ditto to 's post . The sleep study was really to determine

whether the tonsils and adenoids should come out and whether they played a

big part in 's sleep problems including the apnoea. As it was, she

passed with flying colours but the ENT SpR decided to ignore them and go

with parental feedback and account (I have never known this hospital to do

that so kudos to this guy). If you are already looking at surgery, sleep

study not necessary. also seems to have given up the apnoea since

surgery, but not totally sure on this. We have had a couple of really good

nights' sleep so fingers crossed. I feel really confident that she will get

to sleep well in due course. It is sort of end of winter here and there are

countless bugs going around and her CHARGE sleep disturbance is always at

the worst in mid colds or leading up to some bug so feel maybe we will get

our respite soon. Will of course keep you posted.

I understand fully your concern about yet another surgery of course. Guess

ultimately we just weigh up the longterm pros and cons. If it is any

consolation, this particular surgery is really quick. J also had

gromets/tubes inserted at same surgery, they also found skin/melanin growth

which needed to be removed from her eardrum and with all that she was out of

theatre in less than one hour.

Other things, has for some time now had a great immune system so her

tonsils and adenoids had obviously finished their job. Incidence of

infections does not seem to have increased with removal. On risk of

bleeding, did not happen. We did though, as a precaution, get some

homeopathic remedies just in case but she did not need them. She recovered

long before the 2 weeks it was recommended she stays off school and she was

just bored at home. Tonsilitis for ? Yikes! Horrible! I used to get

this regularly as a teen and still get it sometimes and it was and is

still HELL! Simon had his removed years ago so he is OK. J has never

had tonsilitis as far as we know but I keep thinking all the treatment for

sinus infections must affect her tonsils as well as ears and limit

infections. Her problems really were mostly obstruction and apnoea.

5-2 split in medics' view strikes me as a clear majority. Just as a matter

of interest, which professionals consider what?

Hope your consultation with ENT goes well and good luck. Happy to

comment (not always with such bias) and answer anything you need. After

all, you have come up trumps for me. By the way, 2 more weeks to the

other. Man, am I beginning to get nervous!

Cheers...........

Flo

>

> ,

>

> If you are considering having the tonsils and adenoids removed you may not

> need the sleep study done. Garland had a sleep study done at 18 months old

> and had the T & A done. We all have been sleeping through the night since

> then. He is 4years old now. I would say that if you feel that strong about

> it then push for it.

>

> , Randy & Garland (CHARGEr 4yrs.) Goodiwn

>

> ---- Kauffman wrote:

>

> =============

> Hi Flo,

>

> Thanks so much for posting about this! It comes at just the right time

> for us, as is just now getting over a severe case of tonsillitis this

> past week. It started out as a sinus infection, but then turned into

> tonsillitis--high fever for five days, she wouldn't eat, but we were lucky

> enough that she would take enough liquids to keep herself hydrated. That's

> the worst I've ever seen her feel--she's rebounded from surgeries quicker

> than this--which makes me want to raise the case even more of having her

> tonsils and adenoids removed.

>

> I'm planning to make an appointment with her ENT to get in as soon as we

> can to discuss this. We have varying opinions on this from all her medical

> providers, but 5-2 say that her tonsils are enlarged enough even when she's

> well to be causing breathing problems at night and recurrent sinus

> infections. I guess we're just at the point where we see no harm in

> removing them to see if it might help sleep issues, sinus problems,

> etc. Not that I'm eager for to go through another surgery, but if it

> helps lessen some of these problems, then what have we got to lose?

>

> I'm wondering, too, if should have a sleep study. She's a

> consistent waker at night too (I think you and I have talked about the fun

> sleep problems before!), and I'm wondering if she has some apnea going

> on. Sometimes if she's sleeping and I lay down by her for a few minutes, I

> can actually spot times where she stops breathing. I think that may be

> another factor. Did 's doctors recommend anything to help the apnea?

>

> OK, I'm rambling now so I'll quit, but I do appreciate the info on

> . Glad you are getting more sleep now--hopefully it will get even

> better in the future! Wish we lived closer--we'd put and in

> the same room together and let them party all night if they wanted! :-)

>

> ---------------------------------

> Yahoo! Mail

> Bring photos to life! New PhotoMail makes sharing a breeze.

>

March 19, 2006

Flo,

does have narrow nasal passages, so anytime she gets the least little

amount of head congestion, her passages swell to the point where she has to

breath out of her mouth. Hard to sleep much when you're like that--I know

myself because I have sinus infections several times a year. (Cincinnati is the

sinus/allergy capital of the U.S., I think!) has only had full-blown

tonsillitis this one time, at least that we're aware, but she gets sinus

infections often and sometimes has a raw throat due to all the drainage.

Our ENT is a pretty reasonable man, so we're hoping he will see the whole

picture and side with us on the tonsillectomy. One of 's pediatricians

ordered an x-ray of 's throat, and she said the x-ray clearly showed

enlarged tonsils, at least to her and another ped in the same office. We're

going to have that sent to the ENT as further proof. We'll see how it goes.

Hope you get some sleep there soon!

, mom to (4)

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March 19, 2006