Help/Advice for removing tonsils and adnoids for

December 6, 2006

I am mom to C.J. who is 20 months old. He has had fevers now that spike as high

as 105.9. They come every 2-3 weeks and last 4-5 days. We got the same story

of viruses until I noticed a pattern. He has had tubes put in and that did away

with all ear infections but has continued with the fevers. He has no other

symptoms except swollen glands. The last fever he had (well it started last

night) he has an awful runny nose. I had him checked and everything is clear

(ear, nose throat). We went ahead and gave him the prednisone and his fever was

down in a couple of hours. We have been to the rheumatologist and he did any

blood work that he thought was necessary on top of the many tests he has already

had. He then referred us to an ENT in Boston who researches and has a

daughter who had it. He felt C.J. was a classic case and felt no need to

do any further testing. His recommendation was to have C.J.'s tonsils and

adnoids removed. He has had 30 cases in which

he removed the tonsils and adnoids and all but one never got a fever again. My

husband and I are having a tough time putting him through another surgery but

can't stand the thought of seeing him suffer every two to three weeks (which may

come sooner I have been told by using the steroids). Has anyone opted for

surgery? I also read that many children with are around 5 or older. Is

he too young to be diagnosed with ? We are looking for any help or advise

to make his quality of life better. Thank you

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

Have a burning question? Go to Answers and get answers from real people

who know.

December 6, 2006

Hi, my name is Kim and my son started having fevers about 5 months ago and is

almost 18 months old now. His fevers come every 18 days and last 4 days. The

highest the fevers have gone are 104.7. I have heard good things about having

tonsils removed but unfortunatly there isn't any real hard data on it. I am

interested to hear what people have to say about it as well.

Owen Haynes <odac1890@...> wrote: I am mom to C.J. who is 20

months old. He has had fevers now that spike as high as 105.9. They come every

2-3 weeks and last 4-5 days. We got the same story of viruses until I noticed a

pattern. He has had tubes put in and that did away with all ear infections but

has continued with the fevers. He has no other symptoms except swollen glands.

The last fever he had (well it started last night) he has an awful runny nose. I

had him checked and everything is clear (ear, nose throat). We went ahead and

gave him the prednisone and his fever was down in a couple of hours. We have

been to the rheumatologist and he did any blood work that he thought was

necessary on top of the many tests he has already had. He then referred us to an

ENT in Boston who researches and has a daughter who had it. He felt C.J.

was a classic case and felt no need to do any further testing. His

recommendation was to have C.J.'s tonsils and adnoids

removed. He has had 30 cases in which

he removed the tonsils and adnoids and all but one never got a fever again. My

husband and I are having a tough time putting him through another surgery but

can't stand the thought of seeing him suffer every two to three weeks (which may

come sooner I have been told by using the steroids). Has anyone opted for

surgery? I also read that many children with are around 5 or older. Is he

too young to be diagnosed with ? We are looking for any help or advise to

make his quality of life better. Thank you

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

Have a burning question? Go to Answers and get answers from real people

who know.

December 6, 2006

I am mom to (will be 2 on the 23rd this month). She was diagnosed with

in August after having tubes put in her ears in June this year. I'm in

the same situation. Her doctor put her on Prednisolone only during her

episodes. Now her fevers are 10-17 days apart & takes one dose of Prednisolone

when her fever reaches 101 which takes care of the fever. Except for this last

one. Her doctor also put her on Zantac twice a day which hasn't done anything.

This time the steroid brought the fever down but she ran a low grade fever up &

down for 3 days. This was not a normal episode so we went back to the doctor

today & she has an ear infection plus the tonsils are huge again like they are

during an episode. Now her doctor wants her to see the ENT doctor to talk about

removing the tonsils/adnoids.

I hate to see her have another surgery but I'ld rather do that than have her

sick all the time. It's so hard on their bodies. Hopefully she will be one of

the many after the surgery that can say goodbye to the .

Karri

Linehan <kimlinehan@...> wrote:

Hi, my name is Kim and my son started having fevers about 5 months ago

and is almost 18 months old now. His fevers come every 18 days and last 4 days.

The highest the fevers have gone are 104.7. I have heard good things about

having tonsils removed but unfortunatly there isn't any real hard data on it. I

am interested to hear what people have to say about it as well.

Owen Haynes <odac1890@...> wrote: I am mom to C.J. who is 20 months old.

He has had fevers now that spike as high as 105.9. They come every 2-3 weeks and

last 4-5 days. We got the same story of viruses until I noticed a pattern. He

has had tubes put in and that did away with all ear infections but has continued

with the fevers. He has no other symptoms except swollen glands. The last fever

he had (well it started last night) he has an awful runny nose. I had him

checked and everything is clear (ear, nose throat). We went ahead and gave him

the prednisone and his fever was down in a couple of hours. We have been to the

rheumatologist and he did any blood work that he thought was necessary on top of

the many tests he has already had. He then referred us to an ENT in Boston who

researches and has a daughter who had it. He felt C.J. was a classic

case and felt no need to do any further testing. His recommendation was to have

C.J.'s tonsils and adnoids

removed. He has had 30 cases in which

he removed the tonsils and adnoids and all but one never got a fever again. My

husband and I are having a tough time putting him through another surgery but

can't stand the thought of seeing him suffer every two to three weeks (which may

come sooner I have been told by using the steroids). Has anyone opted for

surgery? I also read that many children with are around 5 or older. Is he

too young to be diagnosed with ? We are looking for any help or advise to

make his quality of life better. Thank you

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

Have a burning question? Go to Answers and get answers from real people

who know.

December 6, 2006

Hi my daughter is 22 months and had her tonsil removed November 3rd and had

a fever a week later. We are going to give it one more month to see if the

fevers come back.The surgery it self went good, we had to go to Mayo in

Minnesota to have it done, she was in the hospital for 3 days and 2 nights, it

took

around 3 weeks to get back to her normal self. But remember we had to throw

that fever in there so that just made recovery time longer. I hope this helps,

any other questions email me.

December 7, 2006

As far as I know Zantac is not used for , maybe Fran can comment on

this.

I do know that cimetidine (Tagamet) has shown to be effective.

My son started taking it last March - and hasn't had a fever since.

Ellyn

Mom of (Periodic Fever) (5),

Alyssa(9), and Kate(4)

Philadelphia, PA

karri marinko <kmarinko62@...>

Sent by:

12/06/2006 09:37 PM

Please respond to

To

cc

Subject

Re: Help/Advice for removing tonsils and adnoids for

I am mom to (will be 2 on the 23rd this month). She was diagnosed

with in August after having tubes put in her ears in June this year.

I'm in the same situation. Her doctor put her on Prednisolone only during

her episodes. Now her fevers are 10-17 days apart & takes one dose of

Prednisolone when her fever reaches 101 which takes care of the fever.

Except for this last one. Her doctor also put her on Zantac twice a day

which hasn't done anything. This time the steroid brought the fever down

but she ran a low grade fever up & down for 3 days. This was not a normal

episode so we went back to the doctor today & she has an ear infection

plus the tonsils are huge again like they are during an episode. Now her

doctor wants her to see the ENT doctor to talk about removing the

tonsils/adnoids.

I hate to see her have another surgery but I'ld rather do that than have

her sick all the time. It's so hard on their bodies. Hopefully she will be

one of the many after the surgery that can say goodbye to the .

Karri

Linehan <kimlinehan@...> wrote:

Hi, my name is Kim and my son started having fevers about 5 months ago and

is almost 18 months old now. His fevers come every 18 days and last 4

days. The highest the fevers have gone are 104.7. I have heard good things

about having tonsils removed but unfortunatly there isn't any real hard

data on it. I am interested to hear what people have to say about it as

well.

Owen Haynes <odac1890@...> wrote: I am mom to C.J. who is 20 months

old. He has had fevers now that spike as high as 105.9. They come every

2-3 weeks and last 4-5 days. We got the same story of viruses until I

noticed a pattern. He has had tubes put in and that did away with all ear

infections but has continued with the fevers. He has no other symptoms

except swollen glands. The last fever he had (well it started last night)

he has an awful runny nose. I had him checked and everything is clear

(ear, nose throat). We went ahead and gave him the prednisone and his

fever was down in a couple of hours. We have been to the rheumatologist

and he did any blood work that he thought was necessary on top of the many

tests he has already had. He then referred us to an ENT in Boston who

researches and has a daughter who had it. He felt C.J. was a classic

case and felt no need to do any further testing. His recommendation

was to have C.J.'s tonsils and adnoids

removed. He has had 30 cases in which

he removed the tonsils and adnoids and all but one never got a fever

again. My husband and I are having a tough time putting him through

another surgery but can't stand the thought of seeing him suffer every two

to three weeks (which may come sooner I have been told by using the

steroids). Has anyone opted for surgery? I also read that many children

with are around 5 or older. Is he too young to be diagnosed with

? We are looking for any help or advise to make his quality of life

better. Thank you

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

Have a burning question? Go to Answers and get answers from real

people who know.

December 7, 2006

>>>As far as I know Zantac is not used for , maybe Fran can comment on

this.

I do know that cimetidine (Tagamet) has shown to be effective.

My son started taking it last March - and hasn't had a fever since.>>>

Ellyn,

You are correct... All the research was done with Cimetidine ONLY.

Although Zantac is SIMILAR to Cimetidine it is NOT the same therefore, it is

recommended to use CIMETIDINE for children with .

I checked with the research docs at NIH and with a few other doctors (Lawton and

Feder) who actually initiated using Cimetidine and they all said

the treatment is Cimetidine and NOT any of the other meds in the family...

God Bless

Fran

Fran Bulone RN

Mom to ph 7yr CIAS1 mutation 11/05; Dyspraxia 11/06

Waxhaw NC

/

December 7, 2006

My daughter is 2 yrs and 9 months old. She has been fevering for

over a year and we also got the run around for a long time. About 5

months ago we saw her primary care in the middle of a mnasty fever

and she did a ton of blood work. Her levels were of course elevated

and we were sent to An ID doctor. Form there she had more tests

blood work twice a week for 6 weeks and a genetic test. Just last

month the ID sent us to an ENT because my daughter tonsils are very

large. The ID felt the tonsils were causing a lot of her problems

but she hasn't dignosed as the cause, because we are waiting on

the genetic test first, but she truely believes it is . So we

went to the the ENT and she is going in for surgery next month. I

too am hesitant to put her through surgery, but I watch her suffer

every 3-4 weeks and I just think it could'nt be much worse and it is

worth a try. I hear from other that it is 2 wks of pain and

crankiness, but then things are better and all I have talked to the

fevers were gone. I am optimistic this will owrk and I definately

think it is worth putting her through surgery in our case. The

episodes are hard to live with and she is miserable for 3-4 days with

fever and then another 3-4 days to recover and start eating again due

to the mouth sores.

Good Luck

Sara

Makenna 2 3/4 years (fevering since 12 months)

>

> I am mom to C.J. who is 20 months old. He has had fevers now that

spike as high as 105.9. They come every 2-3 weeks and last 4-5

days. We got the same story of viruses until I noticed a pattern.

He has had tubes put in and that did away with all ear infections but

has continued with the fevers. He has no other symptoms except

swollen glands. The last fever he had (well it started last night)

he has an awful runny nose. I had him checked and everything is

clear (ear, nose throat). We went ahead and gave him the prednisone

and his fever was down in a couple of hours. We have been to the

rheumatologist and he did any blood work that he thought was

necessary on top of the many tests he has already had. He then

referred us to an ENT in Boston who researches and has a

daughter who had it. He felt C.J. was a classic case and felt

no need to do any further testing. His recommendation was to have

C.J.'s tonsils and adnoids removed. He has had 30 cases in which

> he removed the tonsils and adnoids and all but one never got a

fever again. My husband and I are having a tough time putting him

through another surgery but can't stand the thought of seeing him

suffer every two to three weeks (which may come sooner I have been

told by using the steroids). Has anyone opted for surgery? I also

read that many children with are around 5 or older. Is he too

young to be diagnosed with ? We are looking for any help or

advise to make his quality of life better. Thank you

>

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

> Have a burning question? Go to Answers and get answers from

real people who know.

>

December 8, 2006

I am mom to Cade 3-1/2 yrs old. He was diagnosed with in Sept of 06. We

were referred to a Dr. in Dallas (Childrens Medical Center) an immunologist. We

gave him the prednisone and it brought the fever down. The Dr. who has seen

many patients with this recommended T & A removal. He told us the out of 17

patients he has treated only one still has episodes and he only has like one or

two a year. and hes is 17 yrs old. He recommended an ENT in Dallas at Childrens

and we had Cade's tonsils and Adnoids removed in October. So far no fever

episodes and Cade is a different young boy, playing,growing, eating better,

sleeping better, I could go on. The only thing is he complains of his feet

hurting and legs and hands only sometimes and only at night (maybe growing

pains)???

The operations was not that bad just a week or two of pain which was controled

with medication and bad breath. Cade is definetly a different boy. What a

difference. I have been scared to write on here of fear I would jinx it and it

would come back. But I read all of these emails and see you guys asking about

T & A. I would do it over again 10 times because I can see such a dramatic

difference.

Hopefully it will never come back.

Leanne

mom to Cade 3-1/2 ()

25 yrs old

Alisha 20 yrs old

yes! its true there is a big gap there!!! Cade was our surprise baby and what

a joy he is to us!

karri marinko <kmarinko62@...> wrote:

I am mom to (will be 2 on the 23rd this month). She was

diagnosed with in August after having tubes put in her ears in June this

year. I'm in the same situation. Her doctor put her on Prednisolone only during

her episodes. Now her fevers are 10-17 days apart & takes one dose of

Prednisolone when her fever reaches 101 which takes care of the fever. Except

for this last one. Her doctor also put her on Zantac twice a day which hasn't

done anything. This time the steroid brought the fever down but she ran a low

grade fever up & down for 3 days. This was not a normal episode so we went back

to the doctor today & she has an ear infection plus the tonsils are huge again

like they are during an episode. Now her doctor wants her to see the ENT doctor

to talk about removing the tonsils/adnoids.