and figuring out whether to do T&A

[Guest guest]

Hi Everyone,

The reason I'm posting is because I've noticed how many parents are

going out and getting their kids a T & A and just wanted to tell you to

not jump into doing that too quickly. Many kids are initially

diagnosed as having , way too quickly if you ask me. There are

many other reasons a child can fever at young ages, not just .

There are actual periodic fever syndromes, as well as RA,

tonsillitis, and IBD that can cause high fevers and all have the same

symptoms found in . So I thought I'd add a paragraph I found on

a website about .

Episodes are like clockwork, with a high fever that is sustained for

several days. It can be accompanied by chills, swollen lymph nodes

in neck and a bad sore throat, as well as apthous ulcers in the

mouth. Some children also have bellyache, headache, vomiting and

fatigue. The child is also completely well between episodes,

appetite and energy are normal, lost weight is regained, and growth

and development progress. The following are NOT symptoms of –

myalgia, arthralgia, drenching sweats, leg pains. Most children who

have do not get the typical " sicknesses " that go around, in

fact, most only ever get sick with their .

I just want parents to be fully informed because a T & A is after all

surgery, and won't work if your child doesn't have true . Just

thought I'd share with you too, that my son Mason suffered with high

fevers and all the symptoms for years when he was younger. He

is being seen at the NIH, and initially they even thought it was

... these are the best of the best in our country and they mis-

labeled him for a year! Anyways, my son then had to undergo major

intestinal surgery at 3 years old as his one fever caused his

intestine to twist up ... after that surgery he didn't fever for

several months, but this doesn't mean kids should go out and get

major intestinal surgery ...

Make sure to read the paragraph above about what is NOT ...

like the pains I know many of you mentioned your child having with

their episodes, pains in their legs, etc. ... this is not .

Also, a child is completely healthy between episodes and most don't

get other sicknesses either. Also, remember that many doctors label

kids as having , when in fact they probably have tonsillitis.

does not cause inflamed tonsils, it only causes a bad sore

throat.

As frustrating as it is to see your child sick, don't jump too

quickly into the T & A thing. My son is still undiagnosed, but his

Doctors all feel his fevers and other symptoms are all just a prelude

to an auto-immune disease he'll probably get in his teenage years

(believe it or not, many Specialists see children who fever for many

years prior to getting RA, or prior to getting Crohns or Ulcerative

Colitis).

I just wanted to give my thoughts on this, because in recent days I

saw so many posts from parents talking about getting their child a

T & A, and I just want you all to be informed. You really MUST rule

everything out prior to doing this surgery. If your child has any

other symptoms, other than the ones listed on many many websites

about , then your child doesn't have . Also, keep in mind

if your child is asthmatic ... they more than likely do not have

(this is something we learned at the NIH), they probably have

an auto-immune disease or will at some point get one (as asthma is

also auto-immune).

Wishing you all the best in the New Year! Take care and God Bless!

Heidi

Mommy of Mason (8 years old, post simgoid colon resection, CIAS1 gene

mutation, periodic fevers, asthma, mickey button since 9/07

for " failure to thrive " issues), reflux

Amber (12 years old, hearing loss due to anaphylactic episode,

asthma)

(15 years old, Crohns disease)

[Guest guest]

Heidi,

I'm not sure I feel completely convinced of your post and I mean NO

disrespect. I don't think it's wise to tell some what their children

have and don't have when you are not a physican or you are not the

child's physican. I do think it's good to remind people of other

possibilities. My son had every possible sympton a child with

has. He also had sweats and chills from his fever spiking up and

down. That doesn't seem unreasonable to me. He had his fever every

two weeks on the dot. He was experiencing an inability to walk

during some of his fevers- I believe that's from being weak from not

eating and fevering. We have had to carry our son to the bathroom

during some of his fevers. Also, he did have ear infections between

episodes. My reason for believing he was sick during episodes is

because he was left untreated for almost two years and his poor body

never recovered. Also, prednisone lowers the immune system. He

responded well to his prednisone and extremely well to his T/A. He

has not fevered in the 2 months from his T/A. He had a huge growth

spurt following his T/A and is actuallly eating food. My 5 year old

son keeps asking me why he used to be sick all the time. I believe

in our diagnosis of . Doing the T/A came with risks of all

sorts, including the fact that it might not stop the fevers. This is

not a guarenteed cure for . I also suspect my sons may

come back later on in life or maybe it won't. It's a curious

disease. We have ruled everything else out. The emotional roller

coaster parents and children are on is not fair; well the whole

family for that matter. Going through the tests is scary because

they are testing for cancer and all the other horrible things you

pray your child does not have. By being given the diagnosis of

I was given some comfort in knowing I am not crazy. There is nothing

I can do about a pending auto immune disorder- it just happens. So

today, my son had . I just would caution anyone in this group

to state something so definate because I think is not a cookie

cutter disease. I think it's up to the physicans to decide who has

this or not. I know you were trying to be helpful, but I would look

at stating the information as an FYI instead of putting yourself out

there as the expert. There are only 5 patients at the Mayo

Clinic so I don't really think it's getting over diagnosed in MN.

This is a site and brings in people that have the diagnosis

from all over the world. So I would expect to be talking to a lot of

people with this diagnosis on this site or others that doctors are

looking at it as a possibility. I think the T/A is a wonderful

choice for our family, even if it only brings my son temporary

relief. I would encourage others to look at that option, but I think

that is up to the family on what decision they make about that. They

have to look at all the information presented to them. This is an

option we saw that offered us hope and we had to take it. Best

wishes on your child's journey. My friend has been waiting for her

auto immune disease to finally materialize for years so I know what

you are saying about that. I hope that your son can escape something

like that!

Lynn

[Guest guest]

Heidi,

I'm not sure I feel completely convinced of your post and I mean NO

disrespect. I don't think it's wise to tell some what their children

have and don't have when you are not a physican or you are not the

child's physican. I do think it's good to remind people of other

possibilities. My son had every possible sympton a child with

has. He also had sweats and chills from his fever spiking up and

down. That doesn't seem unreasonable to me. He had his fever every

two weeks on the dot. He was experiencing an inability to walk

during some of his fevers- I believe that's from being weak from not

eating and fevering. We have had to carry our son to the bathroom

during some of his fevers. Also, he did have ear infections between

episodes. My reason for believing he was sick during episodes is

because he was left untreated for almost two years and his poor body

never recovered. Also, prednisone lowers the immune system. He

responded well to his prednisone and extremely well to his T/A. He

has not fevered in the 2 months from his T/A. He had a huge growth

spurt following his T/A and is actuallly eating food. My 5 year old

son keeps asking me why he used to be sick all the time. I believe

in our diagnosis of . Doing the T/A came with risks of all

sorts, including the fact that it might not stop the fevers. This is

not a guarenteed cure for . I also suspect my sons may

come back later on in life or maybe it won't. It's a curious

disease. We have ruled everything else out. The emotional roller

coaster parents and children are on is not fair; well the whole

family for that matter. Going through the tests is scary because

they are testing for cancer and all the other horrible things you

pray your child does not have. By being given the diagnosis of

I was given some comfort in knowing I am not crazy. There is nothing

I can do about a pending auto immune disorder- it just happens. So

today, my son had . I just would caution anyone in this group

to state something so definate because I think is not a cookie

cutter disease. I think it's up to the physicans to decide who has

this or not. I know you were trying to be helpful, but I would look

at stating the information as an FYI instead of putting yourself out

there as the expert. There are only 5 patients at the Mayo

Clinic so I don't really think it's getting over diagnosed in MN.

This is a site and brings in people that have the diagnosis

from all over the world. So I would expect to be talking to a lot of

people with this diagnosis on this site or others that doctors are

looking at it as a possibility. I think the T/A is a wonderful

choice for our family, even if it only brings my son temporary

relief. I would encourage others to look at that option, but I think

that is up to the family on what decision they make about that. They

have to look at all the information presented to them. This is an

option we saw that offered us hope and we had to take it. Best

wishes on your child's journey. My friend has been waiting for her

auto immune disease to finally materialize for years so I know what

you are saying about that. I hope that your son can escape something

like that!

Lynn

[Guest guest]

I believe you should re-read my previous post, as I never told

anyone what their child has or does not have as I would NEVER do

that. The paragraph I inserted into my previous post was from a

website, and can also be found in various documents on this

listserve. All I said was to make sure to get all the facts before

going thru with a T & A ... that is what I said. I also mentioned

information we received while at the NIH, from the Doctors who

actually study this disease. I did not pretend to be some expert on

the disease or make things up just to scare people -- but was trying

to share the information shared with us by the " experts " in our

nation. My son sees the Doctors who have been studying this

disease, as well as the various periodic fever syndromes and I

listen very closely to what they tell us.

I know very well how this affects a family ... my son also has been

to hell and back just like everyone else's here. My son almost died

when his fevers caused his intestine to twist up, and several times

after this due to dehydration from vomiting and diarrhea. I know

how devastating this disease or " unknown " disease can impact a

family.

I also am very aware of tests and procedures and how upsetting all

that can be, as my son has been thru numerous colonoscopies,

endoscopies, intestinal surgeries, lower GIs, upper GIs, bone scans,

biopsies, MRIs, CAT scans, etc. etc. we've been dealing with this

for 8 years. It was also feared he had cancer when they found he

has large holes in his leg bones which cause him severe pain almost

daily. My son also has a gtube to help him grow. Believe me when I

say that I know all about fear ... my son's symptoms are a mile long

but does it really matter whose kid is worse off in this listserve?

This listserve is about educating parents on this disease, and

helping each other through this -- based on the facts and by

listening to what others have been through. That is what I gave in

my previous post.

I was not judging you for getting your child a T & A. I know that is

a tough decision for parents and one your probably pondered over for

some time. I was just trying to be informative and I apologize that

you were offended.

And just so you know, it does matter what your child may get down

the road even if you opt for a temporary fix, if that is what you

feel you got with your child's T & A. Haven't you thought about being

pro-active, rather than wait till the big one hits? We know our son

will get an auto-immune disease at some point because of the labs

being drawn right now, so we are trying to find out exactly what he

will get in hopes of lessening his disease severity when it does

hit.

My oldest daughter also very recently was diagnosed with Crohn's

disease which is a very severe auto-immune disease which affects

every part of her digestive system ... it came without any warning.

I wished we would have maybe been given a " sign " years ago, because

then maybe her health wouldn't be so bad right now. We could have

been more pro-active. So please don't think you have some right

what to tell parents to do either.

Parents must stay informed and do their own research on this disease

and on T & A, because the more knowledge they have about this disease

the better off their child will be. And just don't go assuming

Doctors are always right either ... how many times have they let

many parents on this listserve down over the years with telling

them " its just a virus " ... I know I've heard that statement more

than once in my son's life.

I did not mean for my previous post to upset anyone ... but I did

feel as a part of this listserve that I was allowed to state the

facts.

Heidi

[Guest guest]

I believe you should re-read my previous post, as I never told

anyone what their child has or does not have as I would NEVER do

that. The paragraph I inserted into my previous post was from a

website, and can also be found in various documents on this

listserve. All I said was to make sure to get all the facts before

going thru with a T & A ... that is what I said. I also mentioned

information we received while at the NIH, from the Doctors who

actually study this disease. I did not pretend to be some expert on

the disease or make things up just to scare people -- but was trying

to share the information shared with us by the " experts " in our

nation. My son sees the Doctors who have been studying this

disease, as well as the various periodic fever syndromes and I

listen very closely to what they tell us.

I know very well how this affects a family ... my son also has been

to hell and back just like everyone else's here. My son almost died

when his fevers caused his intestine to twist up, and several times

after this due to dehydration from vomiting and diarrhea. I know

how devastating this disease or " unknown " disease can impact a

family.

I also am very aware of tests and procedures and how upsetting all

that can be, as my son has been thru numerous colonoscopies,

endoscopies, intestinal surgeries, lower GIs, upper GIs, bone scans,

biopsies, MRIs, CAT scans, etc. etc. we've been dealing with this

for 8 years. It was also feared he had cancer when they found he

has large holes in his leg bones which cause him severe pain almost

daily. My son also has a gtube to help him grow. Believe me when I

say that I know all about fear ... my son's symptoms are a mile long

but does it really matter whose kid is worse off in this listserve?

This listserve is about educating parents on this disease, and

helping each other through this -- based on the facts and by

listening to what others have been through. That is what I gave in

my previous post.

I was not judging you for getting your child a T & A. I know that is

a tough decision for parents and one your probably pondered over for

some time. I was just trying to be informative and I apologize that

you were offended.

And just so you know, it does matter what your child may get down

the road even if you opt for a temporary fix, if that is what you

feel you got with your child's T & A. Haven't you thought about being

pro-active, rather than wait till the big one hits? We know our son

will get an auto-immune disease at some point because of the labs

being drawn right now, so we are trying to find out exactly what he

will get in hopes of lessening his disease severity when it does

hit.

My oldest daughter also very recently was diagnosed with Crohn's

disease which is a very severe auto-immune disease which affects

every part of her digestive system ... it came without any warning.

I wished we would have maybe been given a " sign " years ago, because

then maybe her health wouldn't be so bad right now. We could have

been more pro-active. So please don't think you have some right

what to tell parents to do either.

Parents must stay informed and do their own research on this disease

and on T & A, because the more knowledge they have about this disease

the better off their child will be. And just don't go assuming

Doctors are always right either ... how many times have they let

many parents on this listserve down over the years with telling

them " its just a virus " ... I know I've heard that statement more

than once in my son's life.

I did not mean for my previous post to upset anyone ... but I did

feel as a part of this listserve that I was allowed to state the

facts.

Heidi

[Guest guest]

I believe you should re-read my previous post, as I never told

anyone what their child has or does not have as I would NEVER do

that. The paragraph I inserted into my previous post was from a

website, and can also be found in various documents on this

listserve. All I said was to make sure to get all the facts before

going thru with a T & A ... that is what I said. I also mentioned

information we received while at the NIH, from the Doctors who

actually study this disease. I did not pretend to be some expert on

the disease or make things up just to scare people -- but was trying

to share the information shared with us by the " experts " in our

nation. My son sees the Doctors who have been studying this

disease, as well as the various periodic fever syndromes and I

listen very closely to what they tell us.

I know very well how this affects a family ... my son also has been

to hell and back just like everyone else's here. My son almost died

when his fevers caused his intestine to twist up, and several times

after this due to dehydration from vomiting and diarrhea. I know

how devastating this disease or " unknown " disease can impact a

family.

I also am very aware of tests and procedures and how upsetting all

that can be, as my son has been thru numerous colonoscopies,

endoscopies, intestinal surgeries, lower GIs, upper GIs, bone scans,

biopsies, MRIs, CAT scans, etc. etc. we've been dealing with this

for 8 years. It was also feared he had cancer when they found he

has large holes in his leg bones which cause him severe pain almost

daily. My son also has a gtube to help him grow. Believe me when I

say that I know all about fear ... my son's symptoms are a mile long

but does it really matter whose kid is worse off in this listserve?

This listserve is about educating parents on this disease, and

helping each other through this -- based on the facts and by

listening to what others have been through. That is what I gave in

my previous post.

I was not judging you for getting your child a T & A. I know that is

a tough decision for parents and one your probably pondered over for

some time. I was just trying to be informative and I apologize that

you were offended.

And just so you know, it does matter what your child may get down

the road even if you opt for a temporary fix, if that is what you

feel you got with your child's T & A. Haven't you thought about being

pro-active, rather than wait till the big one hits? We know our son

will get an auto-immune disease at some point because of the labs

being drawn right now, so we are trying to find out exactly what he

will get in hopes of lessening his disease severity when it does

hit.

My oldest daughter also very recently was diagnosed with Crohn's

disease which is a very severe auto-immune disease which affects

every part of her digestive system ... it came without any warning.

I wished we would have maybe been given a " sign " years ago, because

then maybe her health wouldn't be so bad right now. We could have

been more pro-active. So please don't think you have some right

what to tell parents to do either.

Parents must stay informed and do their own research on this disease

and on T & A, because the more knowledge they have about this disease

the better off their child will be. And just don't go assuming

Doctors are always right either ... how many times have they let

many parents on this listserve down over the years with telling

them " its just a virus " ... I know I've heard that statement more

than once in my son's life.

I did not mean for my previous post to upset anyone ... but I did

feel as a part of this listserve that I was allowed to state the

facts.

Heidi

[Guest guest]

Let me preface this by saying I am unashamedly very pro T & A for treatment of

based on published clinical research and my son's ENTs former patients. We

too were seen by a doctor who was formally at the NIH and a Rheum at the NIH. If

I had listened to them and not gotten the T & A, my son would still be sick and

stuffed to the gills with a cornucopia drugs. I am thankful to these esteemed

doctors that they ran lots of tests and from this I was able to come to the

conclusion that they really had not a clue what was wrong with my son and that

T & A was the last resort. On the other side of things I too see parents on here

describing their children's symptoms and also get an inclination that they need

to dig deeper. The kids with rashes on their bodies during episodes really

stand out to me.

For us T & A was nothing short of a miracle. WHATEVER my son had/has it is either

cured because of the T & A or in remission. Whatever the case he is MUCH better

off than he was the day before the T & A. We too experienced cessation of ALL

symptoms and a rapid growth spurt. If a T & A gives a child months or years of

relief, it is well worth it.

I'm not so sure I trust the below description of what is or is not. I have

yet to meet an expert in the topic and have not had one single doctor be able to

confidently and articulately tell me what is, so I'm not sure how " they "

come to their conclusions. cannot be put in a tidy bucket, there simply

is not enough info out there for the case to be closed on the symptoms, root

cause, or cure for this disorder.

I don't want other parents to get unnecessary anxiety over T & A, so in response

to the below description in regards to my son's , here is what we saw

different:

-Our episodes were not always clockwork. In times of stress or just out of the

blue my son would go from fevering every 21-24 days to fevering as often as

every 2 weeks (once 3xs in 3 weeks on vacation).

-I suspect my son had leg pain, but he could not talk, so I will never know.

-My son got every sickness that went around, so at the same time he had a T & A,

he got tubes in his ears. He would always pick up any stomach virus making its

rounds and seemed to constantly have an ear infection. He got croup, bronchitis,

strep (once), and always had a runny nose. Definitely NOT a kid who only got

these fevers. If he got a " real " fever due to an illness, it was normally much

lower, like 101. On top of that my son was NOT really 100% OK between episodes.

He slept an excessive amount as compared to his peers. At 18mos old he was

still taking 2 long naps a day and had a bedtime of 6:30. He honestly slept

like an infant and constantly looked exhausted with dark circles around his eyes

At the time I was a stay at home mom who was bored out of her mind with a child

that was asleep practically all day (TV can get really boring and there is only

so much cleaning one can do) He was lethargic and subdued. People called him a

" dream baby " , he was not a dream, he was ill and exhausted and feeling too

terrible to muster up the energy to throw even a temper tantrum. Literally the

day after we had teh T & A all of this changed. He woke up to the world. Started

taking one nap a day, would fight us to stay up until 9pm and then rise and

shine at 6:30AM. It was a REALLY an adjustment to my husband and I, but a very

welcome change.

-I was told that does cause inflamed tonsils. My son would often either

have ulcers on his tonsils and then some weeks he would have the puss packets.

This tonsil involvement was one of the later symptoms. Therefore he started out

NOT having tonsil problems with the fevers and then over time developed tonsil

problems accompanying the fevers.

So according to the below description, my son would not be . Really I don't

care what it is, I just know that for most of his life, I would have labeled him

chronically ill. We've been fever free for over 7 months now and he's had one

cold-that's it. Yes, these fevers could come back and possibly we could find

out he has something more sinister, but for now, when I look at him he's a

normal, healthy, and rambunctious 2.5 year old and for that I pray each night

giving thanks for each healthy day. I hope that a T & A works for all the other

parents out there as well and to those of us to have to continue our search for

our kids, I hope they find answers as well. It’s so stressful to watch your

child suffer. When was sick I always wished so hard that I could bare

the pain and discomfort instead, I would have given anything for that. It felt

so unfair to feel good when my little guy was so miserable.

[Guest guest]

Well said....

Hali mom to Sky (fevers since 1 year) now almost 3..... still considering T & A

even though her fevers are not lasting as long.

[Guest guest]

My daughter had leg pains so bad she would not walk for three days each episode.

She had her tonsils out 18 months ago, she had one leg pain only episode

afterwards and not one problem with fevers or leg pains since.

Trish

[Guest guest]

My daughter had leg pains so bad she would not walk for three days each episode.

She had her tonsils out 18 months ago, she had one leg pain only episode

afterwards and not one problem with fevers or leg pains since.

Trish

[Guest guest]

My daughter had leg pains so bad she would not walk for three days each episode.

She had her tonsils out 18 months ago, she had one leg pain only episode

afterwards and not one problem with fevers or leg pains since.

Trish