Re: HELP - Cimetidine Side Effects Issue

August 22, 2006

Karyn,

Vent all you want! My heart and prayers go out to

you...this is not easy, and many people and places

just do not understand. Fortunately, many do, and are

learning about different diseases and want to help!

Good luck to you....our plan when all of our boys were

in school, was for me to return to teaching, we need

the extra income. With Nino's illness though, it's

just not a do-able option...with visits to the NIH

every four weeks for treatment, just to keep him

functional, no job wants to hire....and of course, his

care needs to come first. The sacrifices sometimes can

be overwhelming and so many on this site can

understand and are going through very similar

situations. Don't ever apologize for venting, that's

the best part of this site.

Take care and God Bless.

Lori Todaro

--- krazzekatt <kfuser@...> wrote:

> My daughter just started taking Cimetidine and I

> know one of the side

> effects is diarreha, but can it be so bad that it's

> (TMI) liquid

> stools? Our daycare does not want us to take her

> until her " liquid

> stools " are gone for 24 hours. I'm almost certain

> it's just the

> medicine. I have a call into our ID Specialist, but

> I know that I

> won't hear from them until tomorrow sometime. I

> asked a good friend

> who has a PhD in Pharmacy and he said that she is on

> a pretty high

> dosage for a child her size, but he could not say,

> for certain, that

> the meds were causing that type of diarreha.

> Basically, I'm just

> asking to see if any of you other parents who have

> had children

> taking Cimetidine - did you notice this as an early

> side effect and

> if so, did it eventually go away?

>

> I'm just so frustrated because our daughter is out

> of daycare at

> least a full week a month (and daycare still gets

> paid) and then when

> this happens we are expected to pull her again.

> Unfortunately, both

> my husband and I have to work outside the home and

> my job provides

> the insurance. I just wish people were more

> understanding of this

> illness. Oh, and daycare is aware it's not

> contagious, we have

> provided documentation to them. But if a child is

> " needy " she still

> does not want us to bring them. Anyway, we have

> checked out other

> daycares and we don't think it will improve anywhere

> we go, plus the

> other places are farther from our jobs and home. I

> so wish we could

> afford a Nanny cause I think that would be our best

> option. Well,

> sorry to go off on a tangent. Thanks for letting me

> vent, it helps

> sometimes to get things off your chest. )

>

> Karyn

> Mom to 29mos

>

__________________________________________________

August 22, 2006

Hi Karyn

My daughter also ended up with diarrhea after taking cimetidine and got horrible

diaper rashes as a result. Now we are not sure if the diarrhea was caused by the

cimetidine because she is now off of it and is still having some GI issues and

rashes. It may have just happen to occur when we started the cimetidine (my

daughter was not even two yet when she was taking it) Since we were not sure,

our rheumatologoist decided to take her off it, since it could be a side effect,

and switched her to singulair. Like I said though, she still has the problems

just not quite as bad as it was while on it. I know, probably more confusion

than help for you but I just wanted to let you know we experienced soemthing

very similar. Is it another symptom, or reaction to the med - I can't tell here,

I wish you much better luck!

Lori

Mom to four daughters including Sam (2) ?PFS

>

> From: " krazzekatt " <kfuser@...>

> Date: 2006/08/22 Tue PM 08:41:56 EDT

>

> Subject: HELP - Cimetidine Side Effects Issue

>

> My daughter just started taking Cimetidine and I know one of the side

> effects is diarreha, but can it be so bad that it's (TMI) liquid

> stools? Our daycare does not want us to take her until her " liquid

> stools " are gone for 24 hours. I'm almost certain it's just the

> medicine. I have a call into our ID Specialist, but I know that I

> won't hear from them until tomorrow sometime. I asked a good friend

> who has a PhD in Pharmacy and he said that she is on a pretty high

> dosage for a child her size, but he could not say, for certain, that

> the meds were causing that type of diarreha. Basically, I'm just

> asking to see if any of you other parents who have had children

> taking Cimetidine - did you notice this as an early side effect and

> if so, did it eventually go away?

>

> I'm just so frustrated because our daughter is out of daycare at

> least a full week a month (and daycare still gets paid) and then when

> this happens we are expected to pull her again. Unfortunately, both

> my husband and I have to work outside the home and my job provides

> the insurance. I just wish people were more understanding of this

> illness. Oh, and daycare is aware it's not contagious, we have

> provided documentation to them. But if a child is " needy " she still

> does not want us to bring them. Anyway, we have checked out other

> daycares and we don't think it will improve anywhere we go, plus the

> other places are farther from our jobs and home. I so wish we could

> afford a Nanny cause I think that would be our best option. Well,

> sorry to go off on a tangent. Thanks for letting me vent, it helps

> sometimes to get things off your chest. )

>

> Karyn

> Mom to 29mos

>

August 23, 2006

Hi All, I apologize for the ignorance, but what benefit is there to

taking this medication that seems to add more side effects? My

daught is 8 & 1/2, she has fevered her entire life-until this year.

The fevers were always >105 & lasted 4-5 days, not herself again

until day 8 & it would cycle & the cycles got closer togeher-every 35

days, then 28, then 21 & every 14 in 2005. It doesn't sound like

anyone taking these medications has any less fevers, decreased

duration or side effects. Am I wrong?

If she has sore throats as a side effect. Push for a tonsillectomy.

I wish we had earlier, before she missed some many days in elementary

school. She had them out in January & we have been fever free in

2006. It is SO worth the chance. It is amazing to me how every has

this diagosis so early, she wasn't dianosed until last fall, afeter 8

years of fever, they kept dismissing it you know the drill... " kids

get 6 to 8 viruses a year "

I hope you find a place that will care for your daughter. I will

pray that you do as I know how difficult those years are & how

frusterating to pay for full-time & not use it!

God luck,

Jane Mom to a 8 -(in remission?)

>

> Hi Karyn

> My daughter also ended up with diarrhea after taking cimetidine and

got horrible diaper rashes as a result. Now we are not sure if the

diarrhea was caused by the cimetidine because she is now off of it

and is still having some GI issues and rashes. It may have just

happen to occur when we started the cimetidine (my daughter was not

even two yet when she was taking it) Since we were not sure, our

rheumatologoist decided to take her off it, since it could be a side

effect, and switched her to singulair. Like I said though, she still

has the problems just not quite as bad as it was while on it. I know,

probably more confusion than help for you but I just wanted to let

you know we experienced soemthing very similar. Is it another

symptom, or reaction to the med - I can't tell here, I wish you much

better luck!

> Lori

> Mom to four daughters including Sam (2) ?PFS

>

> >

> > From: " krazzekatt " <kfuser@...>

> > Date: 2006/08/22 Tue PM 08:41:56 EDT

> >

> > Subject: HELP - Cimetidine Side Effects Issue

> >

> > My daughter just started taking Cimetidine and I know one of the

side

> > effects is diarreha, but can it be so bad that it's (TMI) liquid

> > stools? Our daycare does not want us to take her until

her " liquid

> > stools " are gone for 24 hours. I'm almost certain it's just the

> > medicine. I have a call into our ID Specialist, but I know that

I

> > won't hear from them until tomorrow sometime. I asked a good

friend

> > who has a PhD in Pharmacy and he said that she is on a pretty

high

> > dosage for a child her size, but he could not say, for certain,

that

> > the meds were causing that type of diarreha. Basically, I'm just

> > asking to see if any of you other parents who have had children

> > taking Cimetidine - did you notice this as an early side effect

and

> > if so, did it eventually go away?

> >

> > I'm just so frustrated because our daughter is out of daycare at

> > least a full week a month (and daycare still gets paid) and then

when

> > this happens we are expected to pull her again. Unfortunately,

both

> > my husband and I have to work outside the home and my job

provides

> > the insurance. I just wish people were more understanding of

this

> > illness. Oh, and daycare is aware it's not contagious, we have

> > provided documentation to them. But if a child is " needy " she

still

> > does not want us to bring them. Anyway, we have checked out

other

> > daycares and we don't think it will improve anywhere we go, plus

the

>

> > other places are farther from our jobs and home. I so wish we

could

> > afford a Nanny cause I think that would be our best option.

Well,

> > sorry to go off on a tangent. Thanks for letting me vent, it

helps

> > sometimes to get things off your chest. )

> >

> > Karyn

> > Mom to 29mos

> >

>

August 23, 2006

>>>Hi All, I apologize for the ignorance, but what benefit is there to

taking this medication that seems to add more side effects?>>>

First of all the chance of the side effect is unusual. Occasionally you may see

a side effect from a relatively low risk medication and then you deal with it as

you deal with any medication which may help someone.

As for Cimetidine we have seen a good amount of children who have (not

other PFS) actually abort their fevers within 6 months and NEVER have them

return again. The percentage within this group of kids who have tried Cimetidine

for the 5-6 months treatment is at around 40%, which is excellent.

As for tonsil surgery it is another option however with anesthesia and the

bleeding risk (we have had 7 children at this site bleed out within 10 days of

surgery)... the risks remain higher. The percentage of a " cure " here at the site

with children having tonsils out is around 27% having fevers stop.

All of the treatments have positive results or they would NOT be a treatment for

a specific disorder.

And ONLY a medical professional in conjunction with a parent or caregiver can

advise and make these decisions.

The correct protocol for is trying Steroids first, then trying Cimetidine

and the last treatment is tonsil removal. And still many children continue to

fever.

God Bless

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/

August 23, 2006

My son started on cimetidine in March, and has not had one fever since!

As far as I can tell he has not one side effect from the medication.

It is definately not going to work for everyone, but you can't know until

you try.

For us it has been a Godsend! fevered every two weeks for an

average of

three days. It has now been 5 months.

As with all medications you have to weigh the benefits against the

risk/side effects.

As for paying for day care that you are unable to use.

Our answer ended up being a home daycare. The daycare provider only had

about four

kids a day and she was ablke and willing to deal with 's extra needs

on the bad days.

We were very lucky to find our " Aunt " . I don't know what we would

have done without her!

I think it did cost us slightly more per day - but in the long run, since

we no longer had to pay for daycare

and pay for someone to watch him when the daycare wouldn't take him - it

actually saved us money.

And more importantly gave us great peace of mind.

Ellyn

Mom of (Periodic Fever) (5),

Alyssa(8), and Kate(4)

Philadelphia, PA

" mejanee66 " <jbrown@...>

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08/23/2006 09:43 AM

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Subject: Re: HELP - Cimetidine Side Effects Issue