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,

Welcome to the group.

Has your little one had the tests for the genetic disorders??? HIDS, FMF or

TRAPS.... Just wondering...

As for tonsil surgery it is a good option HOWEVER you really need to think

about Cimetidine (alias Tagamet) before going for surgery. If you read the

archives and go to the file section you will find more info. Cimetidine is

given twice a day... dose depends on weight... for about 6 months. It can

take that long to stop the fevers... MANY kids here have had great results.

If it works you do not need to put your child under surgery... (It did not

work for my son... so we did go for the tonsil surgery since he had 4

episodes of really bad tonsillitis and no relief from Cimetidine)

Prednisone works well on some kids. One dose fever gone... HOWEVER on some

kids it makes the fevers come much more frequent. I would try it.... IF it

works and does not bring on fevers.... more often... It is a decent choice!!

Since the joint pain is SOOOOOOOOOOO pronounced... I would just make sure

that the genetic fever disorders were done. We do see kids with joint

involvement however when described as intense as yours... I would make sure

the appropriate tests were completed... Of course all kids with these

disorders get different symptoms... some come and go while others seem to be

consistent!

God Bless and Welcome

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

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Guest guest

,

Welcome to the group.

Has your little one had the tests for the genetic disorders??? HIDS, FMF or

TRAPS.... Just wondering...

As for tonsil surgery it is a good option HOWEVER you really need to think

about Cimetidine (alias Tagamet) before going for surgery. If you read the

archives and go to the file section you will find more info. Cimetidine is

given twice a day... dose depends on weight... for about 6 months. It can

take that long to stop the fevers... MANY kids here have had great results.

If it works you do not need to put your child under surgery... (It did not

work for my son... so we did go for the tonsil surgery since he had 4

episodes of really bad tonsillitis and no relief from Cimetidine)

Prednisone works well on some kids. One dose fever gone... HOWEVER on some

kids it makes the fevers come much more frequent. I would try it.... IF it

works and does not bring on fevers.... more often... It is a decent choice!!

Since the joint pain is SOOOOOOOOOOO pronounced... I would just make sure

that the genetic fever disorders were done. We do see kids with joint

involvement however when described as intense as yours... I would make sure

the appropriate tests were completed... Of course all kids with these

disorders get different symptoms... some come and go while others seem to be

consistent!

God Bless and Welcome

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

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Guest guest

My daughter to has a lot of abdominal pain that is very difficult to deal with

at times. Warm bathes, heating pad on low... do help some. We use Prednisone

when she is having severe episodes and it does seem to help all of the symptoms

including the abdominal pain.

Christy

Mom to 4 y/o

Missouri Valley Ia

>>> webyers@... 07/14/04 06:17PM >>>

Hi,

My name is and my son Hayden has had since he was about 7

months old. He was recently diagnosed after so many tests I have no

nails left. He is now 3 this month and he is fevering and all the

other horrible symptoms every 20 to 25 days. I was wondering if

anyone has any ideas for the stomach pain and leg pain. He handles

all the rest fairly well, puss on throat, swollen glands, headache,

sores in mouth, but the stomach and legs really bother him. He

rolls in pain with those. He is constantly on the ibu and tylenol

every 4 and 6 hours. He has a seizure otherwise. The steroid is

new to us, our ID at Stanford was reluctant to give it to us. We

haven't tried it yet. I am waiting for next episode. Should I push

for the tonsillectomy? They (Stanford) don't seem to think it is a

cure all, but after reading all the posts it seems to help alot of

these kids. Does the steriod help anything other than the fever,

other symptoms? Glad to be part of the group. I thought for a long

time that I was alone and we were doomed...SO THANK YOU FRAN AND

ALL!!!!!

Byers

California

Mom to Hayden 3yrs, and Phoenix 8 months.

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Guest guest

My daughter to has a lot of abdominal pain that is very difficult to deal with

at times. Warm bathes, heating pad on low... do help some. We use Prednisone

when she is having severe episodes and it does seem to help all of the symptoms

including the abdominal pain.

Christy

Mom to 4 y/o

Missouri Valley Ia

>>> webyers@... 07/14/04 06:17PM >>>

Hi,

My name is and my son Hayden has had since he was about 7

months old. He was recently diagnosed after so many tests I have no

nails left. He is now 3 this month and he is fevering and all the

other horrible symptoms every 20 to 25 days. I was wondering if

anyone has any ideas for the stomach pain and leg pain. He handles

all the rest fairly well, puss on throat, swollen glands, headache,

sores in mouth, but the stomach and legs really bother him. He

rolls in pain with those. He is constantly on the ibu and tylenol

every 4 and 6 hours. He has a seizure otherwise. The steroid is

new to us, our ID at Stanford was reluctant to give it to us. We

haven't tried it yet. I am waiting for next episode. Should I push

for the tonsillectomy? They (Stanford) don't seem to think it is a

cure all, but after reading all the posts it seems to help alot of

these kids. Does the steriod help anything other than the fever,

other symptoms? Glad to be part of the group. I thought for a long

time that I was alone and we were doomed...SO THANK YOU FRAN AND

ALL!!!!!

Byers

California

Mom to Hayden 3yrs, and Phoenix 8 months.

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