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Hi... we have a few California members who hopefully will respond.

BEFORE you THINK of removing tonsils... I would have genetic studies done...

Surgery is a BIG event and if you later find out your child carries a

mutation for another fever disorder.. you may regret putting your child

through this... ALSO BEFORE surgery, try Cimetidine.

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

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Hi... we have a few California members who hopefully will respond.

BEFORE you THINK of removing tonsils... I would have genetic studies done...

Surgery is a BIG event and if you later find out your child carries a

mutation for another fever disorder.. you may regret putting your child

through this... ALSO BEFORE surgery, try Cimetidine.

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

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Fran

Absolutely! But I do hope that someone knows someone out here for me to see.

Azzie mother to Kianna 6 1/2

california

Fran Bulone <fbulone@...> wrote:

Hi... we have a few California members who hopefully will respond.

BEFORE you THINK of removing tonsils... I would have genetic studies done...

Surgery is a BIG event and if you later find out your child carries a

mutation for another fever disorder.. you may regret putting your child

through this... ALSO BEFORE surgery, try Cimetidine.

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

Link to comment
Share on other sites

Fran

Absolutely! But I do hope that someone knows someone out here for me to see.

Azzie mother to Kianna 6 1/2

california

Fran Bulone <fbulone@...> wrote:

Hi... we have a few California members who hopefully will respond.

BEFORE you THINK of removing tonsils... I would have genetic studies done...

Surgery is a BIG event and if you later find out your child carries a

mutation for another fever disorder.. you may regret putting your child

through this... ALSO BEFORE surgery, try Cimetidine.

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

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Hi Fran,

I’m a little confused. Even if the surgery can be tough for 2 weeks or so,

if it can eliminate the symptoms, potentially forever, why would you put

your child on medication? Wouldn’t they have to take the Cimetidine forever?

Val

Mom to Kira – 18 months

Re: a specialist

Hi... we have a few California members who hopefully will respond.

BEFORE you THINK of removing tonsils... I would have genetic studies done...

Surgery is a BIG event and if you later find out your child carries a

mutation for another fever disorder.. you may regret putting your child

through this... ALSO BEFORE surgery, try Cimetidine.

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

Link to comment
Share on other sites

Hi Fran,

I’m a little confused. Even if the surgery can be tough for 2 weeks or so,

if it can eliminate the symptoms, potentially forever, why would you put

your child on medication? Wouldn’t they have to take the Cimetidine forever?

Val

Mom to Kira – 18 months

Re: a specialist

Hi... we have a few California members who hopefully will respond.

BEFORE you THINK of removing tonsils... I would have genetic studies done...

Surgery is a BIG event and if you later find out your child carries a

mutation for another fever disorder.. you may regret putting your child

through this... ALSO BEFORE surgery, try Cimetidine.

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

Link to comment
Share on other sites

Hi Fran,

I'm a little confused. Even if the surgery can be tough for 2 weeks or so,

if it can eliminate the symptoms, potentially forever, why would you put

your child on medication? Wouldn't they have to take the Cimetidine

forever?

Val

Mom to Kira - 18 months

NOOOOOOOO... Please browse the file section... regarding Cimetidine!

Cimetidine FOR is given for 6 months.... if it relieves the fevers

sometimes it is continued for another few months and then gradually reduced

and the child is taken off.... A few needed to repeat for another 6 months

while MOST kids who have relief with Cimetidine.... NEVER get fever

again....

Tonsil surgery is a LAST resort. It is not something taken lightly....

placing a young child under anesthesia.... If a relatively benign medication

works... you would NOT want to risk the bleeding complications with tonsil

removal.... NOR risk the anesthesia complications.....

I tried Cimetidine... for ph however it did nothing.... So we went the

tonsil route.... He had GROSS tonsillitis Grade 4... so I wanted to relieve

him of at least that symptom.... It did that.

So no... Cimetidine is NOT forever... and hopefully... is not

forever either.... MOST children.... who have been followed for many years

continue to show that the disease lasts on average 8 years.... Lessening in

severity has time goes on.

In my son's case... his symptoms are lessening in severity and

frequency.... especially this past year. He started at 6 months old... with

VERY high fevers of 107.5 down to 103.5... lasting 6 days and coming every

21.

Now we are getting fevers every 3 months.... for 4 days and they only go

to 105 and actually regulate easily with Motrin... He is now 5. I am

praying... since we have tried all 3 methods of treatment without much

success.... He follows the average length of the disorder and by 8... he may

be fever free...

Hope that helps....

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

Link to comment
Share on other sites

Hi Fran,

I'm a little confused. Even if the surgery can be tough for 2 weeks or so,

if it can eliminate the symptoms, potentially forever, why would you put

your child on medication? Wouldn't they have to take the Cimetidine

forever?

Val

Mom to Kira - 18 months

NOOOOOOOO... Please browse the file section... regarding Cimetidine!

Cimetidine FOR is given for 6 months.... if it relieves the fevers

sometimes it is continued for another few months and then gradually reduced

and the child is taken off.... A few needed to repeat for another 6 months

while MOST kids who have relief with Cimetidine.... NEVER get fever

again....

Tonsil surgery is a LAST resort. It is not something taken lightly....

placing a young child under anesthesia.... If a relatively benign medication

works... you would NOT want to risk the bleeding complications with tonsil

removal.... NOR risk the anesthesia complications.....

I tried Cimetidine... for ph however it did nothing.... So we went the

tonsil route.... He had GROSS tonsillitis Grade 4... so I wanted to relieve

him of at least that symptom.... It did that.

So no... Cimetidine is NOT forever... and hopefully... is not

forever either.... MOST children.... who have been followed for many years

continue to show that the disease lasts on average 8 years.... Lessening in

severity has time goes on.

In my son's case... his symptoms are lessening in severity and

frequency.... especially this past year. He started at 6 months old... with

VERY high fevers of 107.5 down to 103.5... lasting 6 days and coming every

21.

Now we are getting fevers every 3 months.... for 4 days and they only go

to 105 and actually regulate easily with Motrin... He is now 5. I am

praying... since we have tried all 3 methods of treatment without much

success.... He follows the average length of the disorder and by 8... he may

be fever free...

Hope that helps....

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

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