cimetidine

[Guest guest]

Hi Kristi,

Kristi, it's wonderful that you're having success with Cimetidine!

Congratulations!

Personally, if it's working for you, I'd keep him on it for at least a year.

It's a fairly benign medication, so if it isn't broken, don't try and fix it

would be my advice.

Fran could probably tell you more.

Rosemarie

Mom to Danny age 10

Denver, CO

[Guest guest]

Hi,

Sorry I did not get back sooner, Kristi.

I agree with my friend Rosemarie.

With most kids who have a positive result with Cimetidine it seems those who

go off even using a weaning method require another 6 months... of

Cimetidine...

We have many kids here who have had great results when staying on the

medicine for a year and then slowly weaning off...

I am so happy it is working.... It is wonderful when the medicine works and

you do not need to deal with thinking of surgery or simply have to deal with

the fevers!!

God Bless

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

Kristi and Eli,

My daughter was on Cimidedene (speling unsure) for a couple of years

after she was diagnosed at age 5 with . In her case, we had her

tonsils and adnoids taken out last September.

To that point, she had episodes like clockwork during stressful

periods. Yesterday was the first time she was sick since havin gher

tonsils out.

I cannot speak for every parent, but I am sure in this forum you've

seen countless cases of children with immediate positive results

after having tonsils and or adnoids removed.

Her behavior only a couple of days after the tonsil removal was

striking. She is as happy as can be.

If our child or any other is diagnosed with , go through the

short term stress of having the tonsils out, rather than the long

term agony of .

No child is diagonosed of having after 7 years of age, but -

why have that malady linering around durig those special times like

birthday paties etc..

[Guest guest]

Kristi and Eli,

My daughter was on Cimidedene (speling unsure) for a couple of years

after she was diagnosed at age 5 with . In her case, we had her

tonsils and adnoids taken out last September.

To that point, she had episodes like clockwork during stressful

periods. Yesterday was the first time she was sick since havin gher

tonsils out.

I cannot speak for every parent, but I am sure in this forum you've

seen countless cases of children with immediate positive results

after having tonsils and or adnoids removed.

Her behavior only a couple of days after the tonsil removal was

striking. She is as happy as can be.

If our child or any other is diagnosed with , go through the

short term stress of having the tonsils out, rather than the long

term agony of .

No child is diagonosed of having after 7 years of age, but -

why have that malady linering around durig those special times like

birthday paties etc..

[Guest guest]

Also, the Cimidedene was apparently effective short term to some

extend, but she still had the bouts of .

Also, my daughter has a cold, the first since September when tonsil

were removed.

We're kind of elated., because it's just a little old cold.

Thanksgiving, Christmas, birthdays, not one episode. She is leaps

and bounds happy.

[Guest guest]

,

Sorry to hear about this problem with the Pediatrician and Kylie. Cimetidine

does some in liquid form because that is what we give to our son Blake and we

have been doing so since September 2005.

I know Fran posted information on Cimetinde on Thursday, May 4th that you could

print for the Pediatrician.Also tell the Pediatrician that Cimetidine is the

liquid form of Tagamet, and get used to informing the doctors about and

possible treatments.

Hope this helps

Felicia

Mom to Blake 3,

, CO

--------------------------------------------------------------------------------\

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

Fran or anyone with an answer

I am thinking about trying cimetidine to help with my daughters

fevers. Kylies pediatrician is not on call this weekend, and Kylie

started fevering about an hour ago. I talked to another Doctor that

is on call and he said he would call in the cimetidine, well scratch

that, he just called and said cimetidine does not come in a liquid

form so he called in axid which i guess is in the same family as

cimetidine. These pediatricians dont know anything about this stuff,

i am the one that told them about cimetidine as a possible treatment

option. So know what do i do, do I try the axid? Is there any known

articles that I can print and give to the doctors about using

cimetidine as a treatment option? Any answers would be greatly

appreciated.

thank you

father to kylie

[Guest guest]

Hi

It NEEDS to be Cimetidine and YES it does come in liquid form. The doctor is

incorrect!!

The ONLY documented research is with Cimetidine.

There are hundreds of children in this group who have ALL used liquid

Cimetidine.

Call the pharmacy and ask the pharmacist. They may need to order it in

because it is not a common drug... especially in the amount you will need to

get to give twice a day over months.

You do not need to start it with a fever. It can be started at any time

basically.

Once you speak with a pharmacist ask them to print out the info for you to

bring to the doctor. Again it only comes in a terrible tasting peach flavor

for pediatrics.

It also NEEDS to be given at the highest dose for your child's weight. So

they will need to calculate.

Hope this helps.

Maybe you should wait to speak with your own pediatrician too.

God Bless

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

All,

Anyone giving Cimetidine it can be flavored to taste better all you have to do

is ask the pharmacist to flavor it for an extra charge and go from there. My son

Blake takes Cimetidine and has since September 2005 with no episodes.

Felicia

Mom to Blake 3,

, CO

Fran Bulone <fbulone@...> wrote:

Hi

It NEEDS to be Cimetidine and YES it does come in liquid form. The doctor is

incorrect!!

The ONLY documented research is with Cimetidine.

There are hundreds of children in this group who have ALL used liquid

Cimetidine.

Call the pharmacy and ask the pharmacist. They may need to order it in

because it is not a common drug... especially in the amount you will need to

get to give twice a day over months.

You do not need to start it with a fever. It can be started at any time

basically.

Once you speak with a pharmacist ask them to print out the info for you to

bring to the doctor. Again it only comes in a terrible tasting peach flavor

for pediatrics.

It also NEEDS to be given at the highest dose for your child's weight. So

they will need to calculate.

Hope this helps.

Maybe you should wait to speak with your own pediatrician too.

God Bless

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

Everyone,

I would like to thank you for your responses. I am grateful to have you all to

talk with. We just called the doctor back and told him we wanted the cimetidine

called in and that it does come in a liquid form. After some quarelling and the

doctor making my fiance cry we got it called in. This is the second time a

doctor has become upset with US because we are telling them what to do, I think

they get mad because they have no idea of what do. so thank you everyone

father to kylie

RE: cimetidine

All,

Anyone giving Cimetidine it can be flavored to taste better all you have to

do is ask the pharmacist to flavor it for an extra charge and go from there. My

son Blake takes Cimetidine and has since September 2005 with no episodes.

Felicia

Mom to Blake 3,

, CO

Fran Bulone <fbulone@...> wrote:

Hi

It NEEDS to be Cimetidine and YES it does come in liquid form. The doctor is

incorrect!!

The ONLY documented research is with Cimetidine.

There are hundreds of children in this group who have ALL used liquid

Cimetidine.

Call the pharmacy and ask the pharmacist. They may need to order it in

because it is not a common drug... especially in the amount you will need to

get to give twice a day over months.

You do not need to start it with a fever. It can be started at any time

basically.

Once you speak with a pharmacist ask them to print out the info for you to

bring to the doctor. Again it only comes in a terrible tasting peach flavor

for pediatrics.

It also NEEDS to be given at the highest dose for your child's weight. So

they will need to calculate.

Hope this helps.

Maybe you should wait to speak with your own pediatrician too.

God Bless

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

<>

[Guest guest]

Carmela,

Usually the doctors prescribe the Cimetidine at the highest dose. The dose

is calculated by weight. The doctor you see should know the formula or he

can check with the pharmacy.

Maybe he did not start at the highest dose? I do not know. But the

recommendation by the doctors who identified the immune regulatory effect is

to give the highest dose split in two. therefore BID (twice a day)

It then should be given for 5-6 months to see if it reaches full effect.

The doctors tend to leave the child on for another full six months and then

wean off. (Cut dose in half for a month and then totally off)

If you are seeing a change that is wonderful. I would discuss the dose

situation and raise it to the highest dose allowed. Make sure the doc checks

liver enzymes at 3 or 4 months and if your little one stays on the

medication because it seems to stop the fevers eventually.. Then recheck in

another 3 or 4 months.

I will keep you in my prayers. When Cimetidine works it is wonderful!!

Fran A Bulone

Mom to ph 7 yrs old

Waxhaw, NC

Owner & Moderator Group

<>

[Guest guest]

yes!! I HAD MY SON KADEN ON CIMETIDINE FOR ABOUT 3 MONTHS & I NOTICED

THE FEVERS STARTED COMING SOONER. THAT IS ONE OF THE REASON'S I STOPPED

HIM FROM TAKING IT. PLUS I READ ABOUT LIVER DAMAGE. BUT I HAVE DONE

SOME MORE RESEARCH & KADEN IS GOING THROUGH A REALLY ROUGH EPISODE

RIGHT NOW WITH TERRIBLE MOUTH SORES, I HAVE STARTED HIM BACK ON THE

CIMETIDINE. WE'LL SEE IF IT HAS THE SAME EFFECT OF MAKING HIS FEVERS

COME CLOSER TOGETHER. BUT YES, WE HAVE SEEN THAT IT WAS DOING THAT. IS

YOUR DAUGHTER ON PREDNISONE AT ALL? I KNOW THAT CAN ALSO MAKE THE

FEVERS COME SOONER. 2 WEEKS ISN'T VERY MUCH TIME INBETWEEN EACH

EPISODE. I FEEL FOR YOU GUYS!

AMY (KADEN'S MOM)

>

> Just wondering if any others out there that are using cimetidine

have

> had relapses with the fevers? My daughter kylie went from having a

> fever every two weeks, and didnt have an episode for two months. She

> then had an episode, then went a month and a half without one. Now

it

> seems maybe as if they have come back to the two week intervals. I am

> praying it hasnt. Just wondering if anyone else has dealt with this.

> Any replys would be appreciated.

>

> Thank you

>

>

> Father to Kylie 3 ()

>

[Guest guest]

Hi ,

I just posted about cimetidine. Are you giving your daughter any

other meds/supplements at the same time as the cimetidine? The

pharmacist just told me that cimetidine is a sensitive drug and needs

to be given by itself by at least an hour or two. I was giving it to

my daughter at the same time as iron drops which can adversely affect

the absorption of the cimetidine. Just an idea.

Best wishes to you and your daughter.

Carmela

Mom to Carina 3 1/2

[Guest guest]

Hey Azzie

No ... the norms are on the lab sheet when it comes back and if it is out of

range (high) it will be indicated right there....

Hope all is well with the children.

You are welcome,

Fran

Fran Bulone RN

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

Waxhaw NC

/

[Guest guest]

Fran,

Thanks for your input regarding the enzyme testing. I took today to the

Rheumotologist who prescribed with Cimetidine. Without me mentioning the

blood work, she recommended an liver enzyme test 4 months into the medication.

She said in a majority of the children that are diagnosed with Periodic Fever

Syndrome/ (not Mediterranian Fever) are responding to Cimetadine. We are so

hopeful this will work!

Thanks for your support and insight!

Fern.

Fran Bulone <fbulone@...> wrote:

Hey Azzie

No ... the norms are on the lab sheet when it comes back and if it is out of

range (high) it will be indicated right there....

Hope all is well with the children.

You are welcome,

Fran

Fran Bulone RN

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

Waxhaw NC

/

[Guest guest]

Fran,

Thanks for your input regarding the enzyme testing. I took today to the

Rheumotologist who prescribed with Cimetidine. Without me mentioning the

blood work, she recommended an liver enzyme test 4 months into the medication.

She said in a majority of the children that are diagnosed with Periodic Fever

Syndrome/ (not Mediterranian Fever) are responding to Cimetadine. We are so

hopeful this will work!

Thanks for your support and insight!

Fern.

Fran Bulone <fbulone@...> wrote:

Hey Azzie

No ... the norms are on the lab sheet when it comes back and if it is out of

range (high) it will be indicated right there....

Hope all is well with the children.

You are welcome,

Fran

Fran Bulone RN

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

Waxhaw NC

/

[Guest guest]

Fran,

I just got the results for Kianna's tests, her levels (liver enzymes) are

all normal. I feel very lucky to be able to continue the cimetidine, its

been a miracle for my family. Fran as always, thanks for everything.

Azzie,

Mom to Kianna 9 (), Rustin 6 and Bella 5 mo (almost!)

From: [mailto: ] On Behalf Of fern

rosenstein

Sent: Monday, January 29, 2007 11:31 AM

Subject: Re: Cimetidine

Fran,

Thanks for your input regarding the enzyme testing. I took today to

the Rheumotologist who prescribed with Cimetidine. Without me

mentioning the blood work, she recommended an liver enzyme test 4 months

into the medication. She said in a majority of the children that are

diagnosed with Periodic Fever Syndrome/ (not Mediterranian Fever) are

responding to Cimetadine. We are so hopeful this will work!

Thanks for your support and insight!

Fern.

Fran Bulone <fbulone@... <mailto:fbulone%40carolina.rr.com> >

wrote:

Hey Azzie

No ... the norms are on the lab sheet when it comes back and if it is out of

range (high) it will be indicated right there....

Hope all is well with the children.

You are welcome,

Fran

Fran Bulone RN

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

Waxhaw NC

/

[Guest guest]

We've been using cimetidine for about 5 months now with our 12 month

old. Her sleeping patterns got drastically (and I do mean

drastically!) worse for at least 2 months before getting better.

Riley has always been a great sleeper until a fever struck and our

pediatrician disagrees that this particular medicine would cause such

a change but that was the only thing that was changed. We still

aren't fever-free but down to 2-3 days now and no vomiting! Life

actually continues somewhat normally now when a fever hits!

Glad you've had such great luck with cimetidine!

, mom to Riley, 12 months old

Atlanta, GA

>

> Hi everybody,

>

> We met with doctors at Lucille Stafford Childrens Hospital at

Stanford

> and were told that our 4 year old son, they are quite sure has

,

> looking over all his health history etc. They have put him on

> Cimetidine and (knock on wood) we have now been 5 weeks totally

fever

> free. Which is a vast improvement since starting in December his

> fevers were coming every week and a half. So we are thrilled!

What is

> amazing to us as well, as he has never been a good sleeper, tossing

and

> turning all night, etc. and of course his sleeping was even worse

when

> he was fevering. Since starting the Cimetidine twice a day, he

sleeps

> very soundly, a huge change. I was wondering if anyone else had

> experienced this improved sleeping on Cimetidine? There have been

no

> side effects to the medicine as well. They were so sure that he

had

> that they decided to try the Cimetidine, and if it worked

they

> would know it is , because the other fever syndromes do not

react

> to Cimetidine. They said that usually about 50% of cases

will

> see improvement from Cimetidine.

>

> Just a quick update and good luck to everybody!

> Robin

>

[Guest guest]

Sorry to hear that you have had problems, we have had the opposite reaction.

My daughter was fever free for 6 months until a couple of weeks ago.

Hopefully we'll have another long stretch. Good luck

Azzie, Mom to Kianna 9

From: [mailto: ] On Behalf Of

jmaloney0802

Sent: Friday, February 23, 2007 7:13 PM

Subject: Re: Cimetidine

We've been using cimetidine for about 5 months now with our 12 month

old. Her sleeping patterns got drastically (and I do mean

drastically!) worse for at least 2 months before getting better.

Riley has always been a great sleeper until a fever struck and our

pediatrician disagrees that this particular medicine would cause such

a change but that was the only thing that was changed. We still

aren't fever-free but down to 2-3 days now and no vomiting! Life

actually continues somewhat normally now when a fever hits!

Glad you've had such great luck with cimetidine!

, mom to Riley, 12 months old

Atlanta, GA

>

> Hi everybody,

>

> We met with doctors at Lucille Stafford Childrens Hospital at

Stanford

> and were told that our 4 year old son, they are quite sure has

,

> looking over all his health history etc. They have put him on

> Cimetidine and (knock on wood) we have now been 5 weeks totally

fever

> free. Which is a vast improvement since starting in December his

> fevers were coming every week and a half. So we are thrilled!

What is

> amazing to us as well, as he has never been a good sleeper, tossing

and

> turning all night, etc. and of course his sleeping was even worse

when

> he was fevering. Since starting the Cimetidine twice a day, he

sleeps

> very soundly, a huge change. I was wondering if anyone else had

> experienced this improved sleeping on Cimetidine? There have been

no

> side effects to the medicine as well. They were so sure that he

had

> that they decided to try the Cimetidine, and if it worked

they

> would know it is , because the other fever syndromes do not

react

> to Cimetidine. They said that usually about 50% of cases

will

> see improvement from Cimetidine.

>

> Just a quick update and good luck to everybody!

> Robin

>

[Guest guest]

We had fevers for one year straight (every 22-26 days apart)..........She was

just put on Cimetidine......she has not had a fever for almost 45 days. The

longest stretch in one year.With no side effects. I am hopeful this is it! And,

we will have a long stretch for months on end. When people say they have had a 6

month stretch and then a fever. How do we know that it is and not just a

regular virus at that point.......just curious............

Fern (mother to , now age 7)

Azzie Fiouzi <azzief@...> wrote:

Sorry to hear that you have had problems, we have had the opposite

reaction.

My daughter was fever free for 6 months until a couple of weeks ago.

Hopefully we'll have another long stretch. Good luck

Azzie, Mom to Kianna 9

From: [mailto: ] On Behalf Of

jmaloney0802

Sent: Friday, February 23, 2007 7:13 PM

Subject: Re: Cimetidine

We've been using cimetidine for about 5 months now with our 12 month

old. Her sleeping patterns got drastically (and I do mean

drastically!) worse for at least 2 months before getting better.

Riley has always been a great sleeper until a fever struck and our

pediatrician disagrees that this particular medicine would cause such

a change but that was the only thing that was changed. We still

aren't fever-free but down to 2-3 days now and no vomiting! Life

actually continues somewhat normally now when a fever hits!

Glad you've had such great luck with cimetidine!

, mom to Riley, 12 months old

Atlanta, GA

>

> Hi everybody,

>

> We met with doctors at Lucille Stafford Childrens Hospital at

Stanford

> and were told that our 4 year old son, they are quite sure has

,

> looking over all his health history etc. They have put him on

> Cimetidine and (knock on wood) we have now been 5 weeks totally

fever

> free. Which is a vast improvement since starting in December his

> fevers were coming every week and a half. So we are thrilled!

What is

> amazing to us as well, as he has never been a good sleeper, tossing

and

> turning all night, etc. and of course his sleeping was even worse

when

> he was fevering. Since starting the Cimetidine twice a day, he

sleeps

> very soundly, a huge change. I was wondering if anyone else had

> experienced this improved sleeping on Cimetidine? There have been

no

> side effects to the medicine as well. They were so sure that he

had

> that they decided to try the Cimetidine, and if it worked

they

> would know it is , because the other fever syndromes do not

react

> to Cimetidine. They said that usually about 50% of cases

will

> see improvement from Cimetidine.

>

> Just a quick update and good luck to everybody!

> Robin

>

[Guest guest]

In a message dated 2/24/2007 12:26:03 P.M. Eastern Standard Time,

ferniespecial@... writes:

When people say they have had a 6 month stretch and then a fever. How do we

know that it is and not just a regular virus at that point.......just

curious............

Fern (mother to , now age 7)

My son , , will be 8 in a few weeks. He was put on cimetidine after

his last episode in July. He was fever free until January. Here is our story

about that.

My insurance requires a 90 day supply of medication--and mail order. Because

I was an employee of the drug store we had special privileges and could fill

our prescriptions in our store--until DEC. That all changed when our store

started mail order service. Basically you bring in the RX we do the paperwork

and the mail order company does the rest.

So, on Dec 28th my mail order drugs arrived.

1/3/07 The first week in January my son went to school even though he was

complaining of headache and his glands seemed a little swollen to me. I gave

him motrin and assumed he was exhausted and catching up on lost sleep from

vacation week.

1/10/07 One week later he woke up complaining of headache, stomach ache,

sore throat and swollen glands. HE looked exhausted and I kept him home from

school for 1 day.

1/16/07 he woke up complaining of headache, swollen glands sore throat and

stomach ache.He looked exhausted. I took him for a strep test and it was

negative. His glands were so swollen he had a lump in his jaw. slight temp of

99.

1/17/07 he seemed to have a cough and runny/stuffy nose--was this just a

cold?

1/30/07--two weeks later I received a call from the school nurse. He went

down complaining of sore throat and headache. They kept getting a temp of 97.5.

Finally after 30 min it was 99. They gave him tylenol

as per instructed. They said he didn't look well. ( tired looking)

Took him for strep test--it was negative. I felt swollen glands in him.

at first I thought he was just getting a cold. The more I looked at the

pattern , the more I realized it was his acting up.

I spoke to the rheumatologist ( who I had seen on 1/22) and we reached a

conclusion.

He had not gained a significant amount of weight so no dosage increase was

indicated. Could it be the Cimetidine??

You see, with the mail order I received a different manufacturer. That was

the last week in DEC so we did an experiment.

I purchased a 30 day supply ( out of my own pocket) of the cimetidine

manufacturer from my regular pharmacy--the one he was on since July.

Guess what--This whole month of Feb so far--no complaints of any kind and he

definitely seems more alert and has his regular energy back.

So --you just never know. But if you write down everything that is going on

you may be able to see the old patterns emerging once again. And when in

doubt speak to your child DR.

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.

[Guest guest]

We have also experienced that our 22 month old son has been sleeping

much better on Cimetidine. He has only been on it about 2 1/2 months

& been fever free for 1 month. Don't know if it is the medicine

itself or that he isn't getting sick, but we'll take it either way!

Melody

>

> Hi everybody,

>

> We met with doctors at Lucille Stafford Childrens Hospital at

Stanford

> and were told that our 4 year old son, they are quite sure has

,

> looking over all his health history etc. They have put him on

> Cimetidine and (knock on wood) we have now been 5 weeks totally

fever

> free. Which is a vast improvement since starting in December his

> fevers were coming every week and a half. So we are thrilled!

What is

> amazing to us as well, as he has never been a good sleeper,

tossing and

> turning all night, etc. and of course his sleeping was even worse

when

> he was fevering. Since starting the Cimetidine twice a day, he

sleeps

> very soundly, a huge change. I was wondering if anyone else had

> experienced this improved sleeping on Cimetidine? There have been

no

> side effects to the medicine as well. They were so sure that he

had

> that they decided to try the Cimetidine, and if it worked

they

> would know it is , because the other fever syndromes do not

react

> to Cimetidine. They said that usually about 50% of cases

will

> see improvement from Cimetidine.

>

> Just a quick update and good luck to everybody!

> Robin

>

[Guest guest]

I actually thought that too, so after her fever (6 mo later!) I took her in

and her pediatrician saw no other correlation, and said that it was her

. But now its been a month and no fever! And its due soon, so I'll

keep you posted. Hopefully I'll get another 6 mo, if not we are going to do

a T & A over the summer.

Azzie, mom to Kianna 9 yrs

From: [mailto: ] On Behalf Of fern

rosenstein

Sent: Saturday, February 24, 2007 9:24 AM

Subject: RE: Re: Cimetidine

We had fevers for one year straight (every 22-26 days apart)..........She

was just put on Cimetidine......she has not had a fever for almost 45 days.

The longest stretch in one year.With no side effects. I am hopeful this is

it! And, we will have a long stretch for months on end. When people say they

have had a 6 month stretch and then a fever. How do we know that it is

and not just a regular virus at that point.......just curious............

Fern (mother to , now age 7)

Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net> > wrote:

Sorry to hear that you have had problems, we have had the opposite reaction.

My daughter was fever free for 6 months until a couple of weeks ago.

Hopefully we'll have another long stretch. Good luck

Azzie, Mom to Kianna 9

From: <mailto:%40>

[mailto: <mailto:%40> ] On Behalf

Of

jmaloney0802

Sent: Friday, February 23, 2007 7:13 PM

<mailto:%40>

Subject: Re: Cimetidine

We've been using cimetidine for about 5 months now with our 12 month

old. Her sleeping patterns got drastically (and I do mean

drastically!) worse for at least 2 months before getting better.

Riley has always been a great sleeper until a fever struck and our

pediatrician disagrees that this particular medicine would cause such

a change but that was the only thing that was changed. We still

aren't fever-free but down to 2-3 days now and no vomiting! Life

actually continues somewhat normally now when a fever hits!

Glad you've had such great luck with cimetidine!

, mom to Riley, 12 months old

Atlanta, GA

>

> Hi everybody,

>

> We met with doctors at Lucille Stafford Childrens Hospital at

Stanford

> and were told that our 4 year old son, they are quite sure has

,

> looking over all his health history etc. They have put him on

> Cimetidine and (knock on wood) we have now been 5 weeks totally

fever

> free. Which is a vast improvement since starting in December his

> fevers were coming every week and a half. So we are thrilled!

What is

> amazing to us as well, as he has never been a good sleeper, tossing

and

> turning all night, etc. and of course his sleeping was even worse

when

> he was fevering. Since starting the Cimetidine twice a day, he

sleeps

> very soundly, a huge change. I was wondering if anyone else had

> experienced this improved sleeping on Cimetidine? There have been

no

> side effects to the medicine as well. They were so sure that he

had

> that they decided to try the Cimetidine, and if it worked

they

> would know it is , because the other fever syndromes do not

react

> to Cimetidine. They said that usually about 50% of cases

will

> see improvement from Cimetidine.

>

> Just a quick update and good luck to everybody!

> Robin

>

[Guest guest]

Hi Angie,

We never tried Prednisone. We have filled the prescription, but I wanted to try

something other than a steroid. Not to mention, 's fevers are 2

weeks apart already. Our ID doc who diagnosed us basically said Prednisone or

nothing. So, I went back to our Immunologist and talked to him about

alternative ways to help her. I mentioned Singular and Naproxen to him but the

Cimetidine was the one he was most comfortable with. She's actually in the

middle of one of her fevers right now, so I'll keep you posted on how it works.

@...: alwstiles@...: Wed, 15 Aug 2007

19:39:21 +0000Subject: cimetidine

Ginger or anyone using CimetidineWhy did your doc recommend cimetidine? How long

did you try the prednisone before being switched??or did you even try prednisone

first.

_________________________________________________________________

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http://newlivehotmail.com/?ocid=TXT_TAGHM_migration_HM_viral_preview_0507

[Guest guest]

We have used Prednisone since January 07. We were on a 35-70 day cycle

(very random). But once we started Prednisone, we've dropped to a 14-18

day cycle. We are trying Cimetidine (but still giving Prednisone for

high fever episodes) for 3 months (starting early July 07) to see if it

makes the intervals between episodes longer and/or if it drops the

temps. Dani's fevers (untreated with Prednisone) are very high usually

105-108 and lasting 4-7 days.

It's still too early to see, but we didn't have a high fever episode for

53 days, yet we had lower fever episodes every 12-16 days (usually never

over 101). However this last episode we hit 106 two days in a row and

administered Prednisone twice. The fever then lasted an additional 3

days with temps 100-101.

We go back to the immunologist in September to see what to do next. She

had indicated we may think about T & A if the intervals didn't lengthen.

Our pediatrician thinks that cimetidine is working somewhat for us and

we should consider it successful. After this last episode -- I'm not

convinced, but I think it will depend on when her next episode is. I'm

willing to give it a few more months to see.

Ginger

Daughter - le, Just Turned 2 years old (fevering since 7 months,

diagnosed at 15 months)

Son - Jay, 3 months old

________________________________

From: [mailto: ] On Behalf Of

Angie

Sent: Wednesday, August 15, 2007 3:39 PM

Subject: cimetidine

Ginger or anyone using Cimetidine

Why did your doc recommend cimetidine? How long did you try the

prednisone before being switched??or did you even try prednisone first.

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

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[Guest guest]

That sounds like what we are going thru now. Our fevers were about every 30 days

very high around 104-105 and now with the prednisone its 13 days. do you see a

immuneologist??

..does Dani still act very sick with chills with the break through fevers

that are low?? does tyenol and motrin control the fevers with the cimetidine??

" Hackett, Ginger " <ginger.hackett@...> wrote:

We have used Prednisone since January 07. We were on a 35-70 day cycle

(very random). But once we started Prednisone, we've dropped to a 14-18

day cycle. We are trying Cimetidine (but still giving Prednisone for

high fever episodes) for 3 months (starting early July 07) to see if it

makes the intervals between episodes longer and/or if it drops the

temps. Dani's fevers (untreated with Prednisone) are very high usually

105-108 and lasting 4-7 days.

It's still too early to see, but we didn't have a high fever episode for

53 days, yet we had lower fever episodes every 12-16 days (usually never

over 101). However this last episode we hit 106 two days in a row and

administered Prednisone twice. The fever then lasted an additional 3

days with temps 100-101.

We go back to the immunologist in September to see what to do next. She

had indicated we may think about T & A if the intervals didn't lengthen.

Our pediatrician thinks that cimetidine is working somewhat for us and

we should consider it successful. After this last episode -- I'm not

convinced, but I think it will depend on when her next episode is. I'm

willing to give it a few more months to see.

Ginger

Daughter - le, Just Turned 2 years old (fevering since 7 months,

diagnosed at 15 months)

Son - Jay, 3 months old

________________________________

From: [mailto: ] On Behalf Of

Angie

Sent: Wednesday, August 15, 2007 3:39 PM

Subject: cimetidine

Ginger or anyone using Cimetidine

Why did your doc recommend cimetidine? How long did you try the

prednisone before being switched??or did you even try prednisone first.

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

====================================================

This message contains PRIVILEGED and CONFIDENTIAL

information that is intended only for use by the

named recipient. If you are not the named recipient,

any disclosure, dissemination, or action based on

the contents of this message is prohibited. In such

case please notify us and destroy and delete all

copies of this transmission. Thank you.

====================================================