Re: swallowing disorder and enlarged tonsils

[Guest guest]

Short on time but please see Lori Rosen (?) recent post on anesthesia

and have a long talk with the anesthesiologist about your child's

delays, your concern about an allergic reaction. Apparently nitrous

oxide and the " aine " drugs are bad for our kids. My son had an

anesthesia reaction so I am pretty vocal about this.

Best wishes,

Liz

[Guest guest]

i hate to write this, but i couldn't sleep at nite if i didn't tell

you our experience...

DD-kate, was born w/ hypotonia, laryngotracheomalacia ( floppy

airway), gerd, and an " upperairway " obsruction...ie-big

tonsils/adenoids, tachypnea (rapid breathing), sleep apnea, and big

time asthma....

kate was hospitalized just about every 3 months for recurrent

pneumonias, until the age of 2.5

her pulmonologist said all this could be resolved by tonsil/adenoid

surgery. well, back in our old town, NO-ONE would touch her ( she was

too sick and only a year old at the time)...but it

was our only hope, otherwise we may have lost her to being so

incredibly ill ALL THE TIME!

after an agonizing year and a half of constant illness and

hospitalization...we moved to a big city (Tampa, Fl) and after 2

months, on cue, she was

felled w/ SEVERE pneumonia...this was it for us.

we went to an ENT, explained the history, and this TOP NOTCH surgeon

took our kate on....

she was going to be admitted overnite...she came out of surgery, and

things went down hill QUICKLY...out of surgery @ 10 a.m. and by 5 a.m.

the next morning she was on a high pressure ventilator called an

oscillator...her lungs filled with fluid.

the pressure on her heart from the lungs being so heavy stopped her

heart at 6 p.m. the next day...nothing was done except for meds, and

as soon as her heart stopped (seemed like an eternity) we all just sat

back and watched her come back to life....

that being said....it was the toughest choice i ever made in my life,

the worst scenario i will ever live through BUT....i would not change

my decision one bit...this surgery changed her life...SAVED her life!!!

her tonsils were necrotic ( rotten dead tissue), and could have proved

fatal anyway, if they had ruptured and spread infection into her blood...

this was april 21, 2007....last year...kate spent 40 days in the

hospital...30 of those in ICU, 27 days on a ventilator.

today....kate is 3 going on 4...still small for age, but grew 5 1/2

inches in the year following surgery....not one single illness to

date, has never missed a day of school....never gets sick....normal

breathing....sleep apnea resolved...GERD resolved...asthma

resolved....feeding issues resolved...great attention

span....interacts....runs....plays....laughs....all the things we

never imagined her doing.she is the happy

healthy little girl that we never knew.....her first 2.5 years, kate

exsisted...just a tired sick little blob...didn't walk, talk, or

interact...

she began to walk two months out of the hospital, now she is working

on running and catching up...babbles like crazy, some verbal apraxia,

but coming along nicely....

this surgery saved her life....it changed every aspect of her life for

the better...but it nearly killed her...i did not have anyone to share

their experience before i had her surgery done....i hope i can help

and offer any support....please email me and we can discuss....i would

be willing to talk on the phone to answer any questions you may have...

i don't mean to scare you, but i wish i had known what we were getting

into....but i would do it all over again....it truly was hell on

earth, but it makes today seem like heaven everyday for our kate!!!

sincerely,

kris justice

>

> Hi!? It's in NH.

>

> I'm writing about my 5 year old son.? He has many issues...global

dyspraxia, hypotonia, dysphagia (aspiration on thin liquids),

dysarthria, adhd, gerd, hiatal hernia, abnormal heartbeat, and sensory

integration issues.

>

> On his recent videoflouroscopic swallow study it showed that he had

enlarged tonsils.? We took him to a ear, nose, and throat specialist

and found that his tonsils are HUGE!? They actually touch each other

in the back of his throat!? ? They are coming out this Friday morning!

>

> Has anyone else been down this road?? If so, how much improvement

have you seen?? I'm hoping that it will help his drooling and that we

may not have to thicken all of his liquids.? Time will tell, I guess.

>

> Looking forward to hearing from anyone with similarities.

>

> Thanks!

>

>

>

>

>

[Guest guest]

Hi ,

 

I am Jeanne and also from NH. I had my sons tonsils and adenoids removed in

April 06. They were also both huge. I have seen drastic improvements in son

since the surgery. He is less sick now. Plus there has been huge gains in

speech. Talking up a storm now. he loves to talk to you. His speech is clearer

now also (it was mostly jumbled could not understand many words,it was mostly a

guessing game). Now speech is much clearer. Has a long ways to go still. I am

not sure about the feeding issues though. It may be a wait and see thing like

you mentioned. I wish you luck . I hope your son has a speedy uneventful

recovery.

 

One quick question for you. Where are you having the surgery done which

hospital? Since I am also from NH. I live in Berlin which is in northern coos

county.

 

Jeanne

From: Racinnuts@... <Racinnuts@...>

Subject: [ ] swallowing disorder and enlarged tonsils

Date: Tuesday, August 12, 2008, 8:50 AM

Hi!? It's in NH.

I'm writing about my 5 year old son.? He has many issues...global dyspraxia,

hypotonia, dysphagia (aspiration on thin liquids), dysarthria, adhd, gerd,

hiatal hernia, abnormal heartbeat, and sensory integration issues.

On his recent videoflouroscopic swallow study it showed that he had enlarged

tonsils.? We took him to a ear, nose, and throat specialist and found that his

tonsils are HUGE!? They actually touch each other in the back of his throat!?

? They are coming out this Friday morning!

Has anyone else been down this road?? If so, how much improvement have you

seen?? I'm hoping that it will help his drooling and that we may not have to

thicken all of his liquids.? Time will tell, I guess.

Looking forward to hearing from anyone with similarities.

Thanks!

[Guest guest]

Hi Jeanne.

Thanks for the info!? How long was his recovery and how old was your son when he

had it done?

It's being done in Manchester.

[ ] swallowing disorder and enlarged tonsils

Date: Tuesday, August 12, 2008, 8:50 AM

Hi!? It's in NH.

I'm writing about my 5 year old son.? He has many issues...global dyspraxia,

hypotonia, dysphagia (aspiration on thin liquids), dysarthria, adhd, gerd,

hiatal hernia, abnormal heartbeat, and sensory integration issues.

On his recent videoflouroscopic swallow study it showed that he had enlarged

tonsils.? We took him to a ear, nose, and throat specialist and found that his

tonsils are HUGE!? They actually touch each other in the back of his throat!?

? They are coming out this Friday morning!

Has anyone else been down this road?? If so, how much improvement have you

seen?? I'm hoping that it will help his drooling and that we may not have to

thicken all of his liquids.? Time will tell, I guess.

Looking forward to hearing from anyone with similarities.

Thanks!

[Guest guest]

Is there a relationship between the enlarged tonsils and laryngomalacia?

[Guest guest]

Hi ,

 

My son was 8 yo. He was put on 2 weeks of limited activity after the surgery, no

jumping, no real excitement. But for the first week and half he was on tylenol

with codeine so he did not feel like doing much  of anything but sleep. My son

bounced back fast.

 

Good luck with the surgery. I have heard good things about both hospitals elliot

and catholic.

 

Your welcome ,

Jeanne

From: Racinnuts@... <Racinnuts@...>

Subject: Re: [ ] swallowing disorder and enlarged tonsils

Date: Wednesday, August 13, 2008, 12:59 PM

Hi Jeanne.

Thanks for the info!? How long was his recovery and how old was your son when he

had it done?

It's being done in Manchester.

[Guest guest]

This is such an interesting discussion. My son has always been pretty

healthy, but I also keep hearing that his tonsils are HUGE. The speech

therapist, and now two of his peds. Hmmmm. No sleep apnea or snoring

so I am going to take him to the ENT soon. My Daughter just had

adnoids and tonsils out last year, but she had so many sicknesses

throat infections, etc. It was a great thing for her- except that she

was so sick after the surgery- throwing up for hours- we had to take

her to the er in the middle of the night. I should have known to ask

for anti-nausea meds b/c she always has reactions with vomiting to any

illness or stress to her body. So, I learned my lesson. Except for

that the surgery went great ans she has been better since then. I do

wonder what the ENT will say about thomas.

Also, someone wrote that they thought the surgery would help with

drooling- Is that true? Does anyone know if this is true? We have

serious drooling issues here!