Re: Do we do a tonsillectomy or not?

[Guest guest]

My father-in-law had his tonsils out at age 12. He had

a rough time recovering. He was told the older you are

usually have a harder recovery. I'm not sure what

truth that has to it. That was said many many years

ago. Just thought I would pass it along. We personally

have not had the surgery. We are in the same boat as

you. I know how hard it is. So I look forward to

hearing advice also. Take care, Eva

--- <alliandjason@...> wrote:

> Our daughter 2 1/2 has had these fevers since

> around 8 months old.

> She has been poked and tested in every way possible.

> All her genetic

> tests have come back negative. She has a diagnosis

> of and our

> last hope is a tonsillectomy. Our Infectious

> Disease doctor suggested

> we try the surgery. We are worried she may be too

> young. Do any of

> you have experience with young children having the

> surgery? What is

> the success rate? I have read the articles but am

> wondering from

> those of you on this list experiencing this first

> hand, have the

> fevers gone away and not come back after surgery?

> Thank you for any

> insight you have. We want to do everything we can

> to get rid of these

> fevers but it would kill us to put her through

> surgery that may not

> help her. The big decision is in our hands but we

> want to get as much

> insight as possible.

>

> Thank you

> mother of ee(2.5)with

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Hello

My daughter Madison has syndrome and was treated with prednisone. THis

did break the cycles but made the cycles come faster. W/o prednisone about

every 3 weeks with prednisone every week. I too looked into having her tonsils

out. Our ID Dr did not reccommend it nor did her pediatrician or local ENT.

But I felt from what i read about here and in other research that it was worth

the risk. Prednisone every week is not good for anyone let alone my small

child. I found a ENT at the Childrens Hospital whos own daughter had and

met with him. He was doing a research paper on and tonsillectomys and

reccommend it.

Well we had Madisons tonsils removed this past New Years Eve- and she had one

small episode ( Fever but only 103 not 105 and sores in mouth) about a month

after the surgury. But NONE SINCE - its been 8 months !!!! I try not to think

about it bc I feel Ill jinx it but its been great. My daughter is a normal kid

again, plays with her friends and I no longer have to schedule events by the

week on the calender.

She did have a rough recovery but its all good now. Even my pedi and Id Dr

said it was a good decision and they were surprised it worked. Sometimes you

have to trust yourself as the parent to know whats best for your child.

Good Luck with whatever you decide- and trust yourself either way

Cheryl

Jeff <evakirstie@...> wrote:

My father-in-law had his tonsils out at age 12. He had

a rough time recovering. He was told the older you are

usually have a harder recovery. I'm not sure what

truth that has to it. That was said many many years

ago. Just thought I would pass it along. We personally

have not had the surgery. We are in the same boat as

you. I know how hard it is. So I look forward to

hearing advice also. Take care, Eva

--- <alliandjason@...> wrote:

> Our daughter 2 1/2 has had these fevers since

> around 8 months old.

> She has been poked and tested in every way possible.

> All her genetic

> tests have come back negative. She has a diagnosis

> of and our

> last hope is a tonsillectomy. Our Infectious

> Disease doctor suggested

> we try the surgery. We are worried she may be too

> young. Do any of

> you have experience with young children having the

> surgery? What is

> the success rate? I have read the articles but am

> wondering from

> those of you on this list experiencing this first

> hand, have the

> fevers gone away and not come back after surgery?

> Thank you for any

> insight you have. We want to do everything we can

> to get rid of these

> fevers but it would kill us to put her through

> surgery that may not

> help her. The big decision is in our hands but we

> want to get as much

> insight as possible.

>

> Thank you

> mother of ee(2.5)with

>

>

>

>

>

>

__________________________________________________

[Guest guest]

My daughter a, age 8, had fevered since she was an infant, all

tests came back negative. She was finally diagnosed with last

Oct. It amazes me that all of you have a diagnosis so early, as we

spent years being sent home with the phrase kids get 6-8 viruses a

year.....anyway, She had her tonsils out January 12th of this year. She

has been fever free since that time. It has been completely life

altering. Her energy level has sky rocketed, she like a new kid. She

used to barely recover from one fever before the next melt down would

come & I'd know the next big fever was on its way. I am an advocate of

the surgery. The last time I spoke advocating the surgery, some of the

feedback was negative. I work in the healthcare field, I have discussed

the surgery or no surgery dilemma with many doctors since my last entry

and the response has been 100%, based on the quality of life issues for

dealing with the fever frequency, they all absolutely recommend it. I

can't speak to the age issue, as my daughter was 7 when she had them

out. She does still get mouth sores, & we will continue to track her

blood work (sed rate still at elevated levels and IgD above normal) but

she (and I) actually have a life!

For all of you with toddlers, grade school is a whole different world.

Missing so much school really affects not only a child educationally,

but socially. She missed over a month of school in second grade, her

fevers always started on Sunday night or Monday. She is exceptionally

bright & tested well above the norm, or the school said they would have

had to hold her back. Having to always play catch-up on the homework &

re-integrate in the social network of friendships can be very stressful.

Lucky for her, I am the Brownie Leader and she had 3 cousins in her same

grade/school so she was always welcomed back into the group. So she had

a built-in social circle. Not everyone has that luxury.

Again, I advocate the surgery. Her recovery was swift, she was out for

one week of school, though she was up & playing in just days. She got

her tonsils in a jar (her badge of courage), took them to school & did

an oral presentation about the whole process. She's the bravest girl I

know.

Jane, a's Mom.

[Guest guest]

We are also considering tonsillectomy if our trial of prednisone

doesn't work. My nephew had his tonsils and adenoids removed when

he was less than one year old, not because of but he had other

issues including bad allergies and sleep apnea. He came through the

surgery fine, and we were told that it's actually easier when

they're younger, because they don't know enough to get anxious. You

just deal with their discomfort afterward, but his wasn't

unbearable, and it made a huge positive difference for him. I'm

also interested to hear other stories if the surgery helped or

didn't for symptoms. Thanks,

Margie

Mom of 3 yr old daughter/Rowan with (we think)

>

> Our daughter 2 1/2 has had these fevers since around 8 months

old.

> She has been poked and tested in every way possible. All her

genetic

> tests have come back negative. She has a diagnosis of and

our

> last hope is a tonsillectomy. Our Infectious Disease doctor

suggested

> we try the surgery. We are worried she may be too young. Do any

of

> you have experience with young children having the surgery? What

is

> the success rate? I have read the articles but am wondering from

> those of you on this list experiencing this first hand, have the

> fevers gone away and not come back after surgery? Thank you for

any

> insight you have. We want to do everything we can to get rid of

these

> fevers but it would kill us to put her through surgery that may

not

> help her. The big decision is in our hands but we want to get as

much

> insight as possible.

>

> Thank you

> mother of ee(2.5)with

>

[Guest guest]

,

my daughter has had fevers since she was 10 mo old. She is now 9 years old.

Needless to say we have put her through more tests than you can imagine. I

would suggest that you try some alternatives before surgery. She is young

and I too would be concerned. We just started Cimetidine thanks to fran and

its working. I would try the alternatives and put surgery last on my list.

Just a suggestion. I know how hard it is but hang in there, ....

Lots of luck,

Azzie, mom to Kianna 9 ()

Rustin 6 and Bella 1 mo!

_____

From: [mailto: ] On Behalf Of

Sent: Wednesday, October 04, 2006 3:12 PM

Subject: Do we do a tonsillectomy or not?

Our daughter 2 1/2 has had these fevers since around 8 months old.

She has been poked and tested in every way possible. All her genetic

tests have come back negative. She has a diagnosis of and our

last hope is a tonsillectomy. Our Infectious Disease doctor suggested

we try the surgery. We are worried she may be too young. Do any of

you have experience with young children having the surgery? What is

the success rate? I have read the articles but am wondering from

those of you on this list experiencing this first hand, have the

fevers gone away and not come back after surgery? Thank you for any

insight you have. We want to do everything we can to get rid of these

fevers but it would kill us to put her through surgery that may not

help her. The big decision is in our hands but we want to get as much

insight as possible.

Thank you

mother of ee(2.5)with

[Guest guest]

We tried cimetidine and it didn't work. We also tried prednislone

and it brought the fevers closer. She has been tested and negative

for the genetic forms. This is why we are considering the

tonsillectomy, it is our last option. It is either try the surgery

or just deal with these fevers. It is a hard decision to make

especially not knowing if it is worth it and if and when to do it?

Thank you all for your insight. We really feel like we need to be

thorough and need as much information and possible to make this

decision.

Thank you,

mother of ee (2.5)

>

> ,

> my daughter has had fevers since she was 10 mo old. She is now 9

years old.

> Needless to say we have put her through more tests than you can

imagine. I

> would suggest that you try some alternatives before surgery. She

is young

> and I too would be concerned. We just started Cimetidine thanks

to fran and

> its working. I would try the alternatives and put surgery last on

my list.

> Just a suggestion. I know how hard it is but hang in there, ....

>

> Lots of luck,

> Azzie, mom to Kianna 9 ()

> Rustin 6 and Bella 1 mo!

>

[Guest guest]

Hi ,

How long did you try the cimetidine? As you have probably read, it could take

up to a year to make any changes. My son has been on it for 6 months and we are

just now seeing some changes, it's not gone but, I think I see it working.

Gretchen and 13

<alliandjason@...> wrote:

We tried cimetidine and it didn't work. We also tried prednislone

and it brought the fevers closer. She has been tested and negative

for the genetic forms. This is why we are considering the

tonsillectomy, it is our last option. It is either try the surgery

or just deal with these fevers. It is a hard decision to make

especially not knowing if it is worth it and if and when to do it?

Thank you all for your insight. We really feel like we need to be

thorough and need as much information and possible to make this

decision.

Thank you,

mother of ee (2.5)

>

> ,

> my daughter has had fevers since she was 10 mo old. She is now 9

years old.

> Needless to say we have put her through more tests than you can

imagine. I

> would suggest that you try some alternatives before surgery. She

is young

> and I too would be concerned. We just started Cimetidine thanks

to fran and

> its working. I would try the alternatives and put surgery last on

my list.

> Just a suggestion. I know how hard it is but hang in there, ....

>

> Lots of luck,

> Azzie, mom to Kianna 9 ()

> Rustin 6 and Bella 1 mo!

>

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

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

The tonsillectomy worked for my daughter Sierra. The surgery is outpatient

and non-evasive and only takes less than a week to heal. It's definitately

worth a try. She's turning 5 next week and has now been fever free for 14

months. She now realizes that she doesn't need to be sick all the time.

>From: Gretchen Danson <gretchendanson@...>

>Reply-

>

>Subject: Re: Re: Do we do a tonsillectomy or not?

>Date: Thu, 5 Oct 2006 19:44:13 -0700 (PDT)

>

>Hi ,

> How long did you try the cimetidine? As you have probably read, it could

>take up to a year to make any changes. My son has been on it for 6 months

>and we are just now seeing some changes, it's not gone but, I think I see

>it working.

> Gretchen and 13

>

> <alliandjason@...> wrote:

> We tried cimetidine and it didn't work. We also tried

>prednislone

>and it brought the fevers closer. She has been tested and negative

>for the genetic forms. This is why we are considering the

>tonsillectomy, it is our last option. It is either try the surgery

>or just deal with these fevers. It is a hard decision to make

>especially not knowing if it is worth it and if and when to do it?

>Thank you all for your insight. We really feel like we need to be

>thorough and need as much information and possible to make this

>decision.

>Thank you,

> mother of ee (2.5)

>

>

> >

> > ,

> > my daughter has had fevers since she was 10 mo old. She is now 9

>years old.

> > Needless to say we have put her through more tests than you can

>imagine. I

> > would suggest that you try some alternatives before surgery. She

>is young

> > and I too would be concerned. We just started Cimetidine thanks

>to fran and

> > its working. I would try the alternatives and put surgery last on

>my list.

> > Just a suggestion. I know how hard it is but hang in there, ....

> >

> > Lots of luck,

> > Azzie, mom to Kianna 9 ()

> > Rustin 6 and Bella 1 mo!

> >

>

>

>

>

>

>

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

>Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

>starting at 1¢/min.

>

>

[Guest guest]

Tonsil removal is a method of treatment for . It is number 3 on the

list after trying Prednisone and Cimetidine. If Prednisone causes the child

to have an increase in frequency and you weight the pros and cons... your

next step is a 6 month treatment with Cimetidine which is given daily twice

a day. If this too fails and the fevers are NOT controlled by antipyretics

and the child symptoms again are severe you should consult with an ENT.

Remember though, YOU MUST make sure your child has and all other

disorders are ruled out to the best of you and your doctors knowledge.

It IS an INVASIVE procedure and it does have the HIGHEST complication rate

for BLEEDING in an elective procedure. Children UNDER 3 are at even a

SLIGHTLY HIGHER rate for that bleeding. It is recommended to wait to 3

although we do see some of the children doing this prior to 3 yrs old.

It is important to make sure you begin hydrating a few days BEFORE the child

has surgery as the number one complication for this surgery is dehydration

causing the scabs on the back of the throat coming off too soon and the

child bleeds and has to return to the operating room.

Maintaining the liquid codeine around the clock for the first 6 days is

important with most children so they will drink or sip on clear liquids and

popsicles and eat Jell-O.... this will lubricate the back of the throat....

moisten the scabs to prevent bleeding.

Many of the specialists (ENT) will keep children in overnight simply

to monitor them closer.

My son did have his tonsils removed prior to 3, it was difficult not easy

but we had no complications. It did NOT work for him however a few years

later new mutations were isolated for genetic disorders and ph has a

marker... so that may play a role in our outcome.

NO surgical intervention is an easy decision and MUST be made with caution.

To date here at the site we have had 6 children go BACK to the operating

room for bleeding challenges a couple days post-op.

God Bless,

Fran

Fran Bulone RN

Mom to ph 7yr CIAS1 mutation 11/05

Waxhaw NC

/