New here and have a few questions

[Guest guest]

Hi, I am new to this group. I have a 22 month old that was diagnosed with

close to a year ago. He has had fevers since 5 months of age. His fevers were

coming every 4-6 weeks with the longest span of 7 weeks, going as high as 104.5

and lasting 4 days. We started Cimetidine treatment last year and quickly noted

that the episodes only lasted 2.5 days, instead of 4 days and the fevers only

went above 103, never 104. We tried stopping the meds. to see what would

happen (hoping that things would not get worse). They immediately reverted back

to the 4 days and 104.5. So, we went back on the meds. We tried our first dose

of Prednisone 4 weeks ago and it did stop the fever that time, sort of. It took

8-10 hours to completely resolve his temperature, but for the entire weekend he

acted as if he still had a fever. He was lethargic, crying for mommy, sleeping

more, glassy eyes, etc. We kept checking his temp., certain that it was up

again, but every time it was normal.

Then, 2 weeks later he had another episode. It was worse than ever. Fever meds

did not bring it down as well as previous times and he was just an all around

miserable baby. He usually is miserable, as all feverish kids are, but this was

2-3 times worse than we had seen.

Then, 2 weeks later (this past weekend), he had another episode. This one still

came too soon, but wasn't as bad as the last one. It only lasted 2.5 days, as

we are still using Cimetidine.

Here are my questions:

1. In all my research I see Cimetidine listed as a treatment for fevers. But I

never see what we experience, that it doesn't stop the fevers, but lowers the

temp. and duration. Anybody else experience this? What is the purpose of the

Cimetidine? Is it really supposed to stop the fevers, or just help them like it

does with us? Anybody worried about this med. long-term?

2. Anyone worried about giving fever meds. long-term and what damage they might

be causing?

3. Anyone see the same results from Prednisone? I am so scared to use it again.

What if the fevers come every week then, since they used to come every 4 weeks

and the Prednisone caused them to come every 2, who's to say the next time they

wouldn't come every 1? Will we always get the fevers every 2 weeks now that we

used Prednisone? That didn't help us!!!! Anyone note the child still acting

feverish after Prednisone?

3. I too have researched about tonsillectomy and our ped. is all for it. We

have an appt. w/ENT July 26, so am praying he will be in agreement. How many of

you have done this surgery? What were your results?

4. I have seen some postings about NIH and being in a study. How did you get in

the study? We live in CO and were diagnosed by Children's Hospital Infectious

Disease. Is there a reason to go to NIH?

5. I have another special child that is on a feeding tube and has many dev.

delays. She is 6 and we will be taking her to 's Hopkins soon to see if they

can help her learn to eat and if they can find a diagnosis for her. I am now

wondering if there would be a reason to have someone look at my baby with PFAP?

Anyone go to 's Hopkins or anywhere else for diagnosis or a second opinion?

Thanks,

-Candace

God is good all the time, all the time God is good.

For I know the plans I have for you, " declares the LORD, " plans to prosper you

and not to harm you, plans to give you hope and a future. 29:11 (NIV)

http://www.fathersloveletter.com/flltextenglish.html

[Guest guest]

Hi, Candace! Your questions are all too familiar. After hearing our

son had/has (20 months old, fevering since 6 months old), we

first tried the prednisone...AWESOME. The fever went away within

hours and we went on with life. But the fevers did come more

frequently, anywhere from about a week to two weeks apart. When our

ID specialist reviewed our fever cycle/journal and saw the more

frequent fevers with the prednisone, he told us to stop using it for

every episode, but to keep it on hand for those " special " occasions

when you just can't endure a fever right then (vacations, grandma's

90th birthday party, etc...). He then had us start a cimetidine

regimen, stating something like 40% of patients will have some

sort of reponse to it, whether the fevers stop all together, or are

shorter in duration, not as high, spaced further apart, etc. We

started the cimetidine in January and were about to quit it because

our son got his fever the next week and we thought it

obviously must not work for him then...but the doctor said it can

take several weeks to a few months for it to have an effect, so we

stuck with it, and our son did have a 10 week break after that

episode...but then the fevers came back and resumed their 3-4 week

cycle. We have noticed they have been 1-2 days shorter and not as

high (as you stated). He is due for a fever right now acutally, but

it hasn't come yet? Last month our specialist increased his

cimetidine dosage, so maybe that is affecting this cycle? He also

checks his liver enzyme levels/function about every 3-4 months. Our

doctor has told us that the cimetidine is a relatively harmless

medicine. He had us meet with a pediatric ENT and has now encouraged

us that the T & A would be our next thing to try and see if we can

stop the fevers all together...or for however long...or maybe not at

all. We are ready for that next step whether it works or not. We

are going to try and get it scheduled early fall as we are due with

a baby girl two weeks from today and want to wait till we get our

bearings with her, etc... Wish we could've gotten it done before her

birth so we wouldn't (hopefully) have to deal with a fever episode

and a newborn at the same time!!

Yes, we worry about using the fever meds long-term, too. With one

of his fever episodes earlier this spring, we noticed 5 days into it

(the fever was actually on its way out) that he was walking funny,

as if one of his hips wasn't working or was locked up. He didn't

seem to be in pain because he would do the best he could and wasn't

fussy about it, but he wouldn't run...and he RUNS everywhere

usually. The pediatrician said give it a week, and it did go

away...but our ID specialist seemed a little curious and " befuddled "

by it. We haven't seen that effect since, but are curious if it was

related to the (or whatever PFS he may have going on) or by

the constant rotation of Tylenol/Ibuprofen for so many consecutive

days, or because the fever gets so incredibly high it somehow

affects his brain (which we've been told countless times no, but we

still wonder)??

Anyway, welcome to the group! I know when I found this site, I was

thrilled. It's like my own world of people who " get " what I'm

talking about. I had never ever even heard of or any of the

PFS's prior to our son's diagnosis. And when I tell people in our

life about what's going on, I just don't think they get it...but

here they do. I still find myself in constant thought/wonder about

why did this happen, what's the link/connection (if any) we all

share, will our next child have it??

Take care,

Kristi

>

> Hi, I am new to this group. I have a 22 month old that was

diagnosed with close to a year ago. He has had fevers since 5

months of age. His fevers were coming every 4-6 weeks with the

longest span of 7 weeks, going as high as 104.5 and lasting 4 days.

We started Cimetidine treatment last year and quickly noted that the

episodes only lasted 2.5 days, instead of 4 days and the fevers only

went above 103, never 104. We tried stopping the meds. to see what

would happen (hoping that things would not get worse). They

immediately reverted back to the 4 days and 104.5. So, we went back

on the meds. We tried our first dose of Prednisone 4 weeks ago and

it did stop the fever that time, sort of. It took 8-10 hours to

completely resolve his temperature, but for the entire weekend he

acted as if he still had a fever. He was lethargic, crying for

mommy, sleeping more, glassy eyes, etc. We kept checking his temp.,

certain that it was up again, but every time it was normal.

>

> Then, 2 weeks later he had another episode. It was worse than

ever. Fever meds did not bring it down as well as previous times

and he was just an all around miserable baby. He usually is

miserable, as all feverish kids are, but this was 2-3 times worse

than we had seen.

>

> Then, 2 weeks later (this past weekend), he had another episode.

This one still came too soon, but wasn't as bad as the last one. It

only lasted 2.5 days, as we are still using Cimetidine.

>

> Here are my questions:

>

> 1. In all my research I see Cimetidine listed as a treatment for

fevers. But I never see what we experience, that it doesn't stop the

fevers, but lowers the temp. and duration. Anybody else experience

this? What is the purpose of the Cimetidine? Is it really supposed

to stop the fevers, or just help them like it does with us? Anybody

worried about this med. long-term?

>

> 2. Anyone worried about giving fever meds. long-term and what

damage they might be causing?

>

> 3. Anyone see the same results from Prednisone? I am so scared to

use it again. What if the fevers come every week then, since they

used to come every 4 weeks and the Prednisone caused them to come

every 2, who's to say the next time they wouldn't come every 1?

Will we always get the fevers every 2 weeks now that we used

Prednisone? That didn't help us!!!! Anyone note the child still

acting feverish after Prednisone?

>

> 3. I too have researched about tonsillectomy and our ped. is all

for it. We have an appt. w/ENT July 26, so am praying he will be in

agreement. How many of you have done this surgery? What were your

results?

>

> 4. I have seen some postings about NIH and being in a study. How

did you get in the study? We live in CO and were diagnosed by

Children's Hospital Infectious Disease. Is there a reason to go to

NIH?

>

> 5. I have another special child that is on a feeding tube and has

many dev. delays. She is 6 and we will be taking her to 's

Hopkins soon to see if they can help her learn to eat and if they

can find a diagnosis for her. I am now wondering if there would be

a reason to have someone look at my baby with PFAP? Anyone go to

's Hopkins or anywhere else for diagnosis or a second opinion?

>

> Thanks,

> -Candace

> God is good all the time, all the time God is good.

> For I know the plans I have for you, " declares the LORD, " plans to

prosper you and not to harm you, plans to give you hope and a

future. 29:11 (NIV)

> http://www.fathersloveletter.com/flltextenglish.html

>

>

[Guest guest]

Kristi, Good luck with the new baby. I'd recommend using the Pridnisone for

fevers near the birth to keep your energy level up enough to care for them both.

Dani's had three fevers, two stomach flus, and thrush (don't know why?) in Jay's

first 7 weeks. Jay is starting to get over his colic - he actually played for

30 minutes today with a smile!

Candace, make sure you are giving the right dose of Prednisone for your child.

They may all be different, but Dani was originally prwscribed 2 ml/kg (that

translated to 2 tsp fir a 32 lb 2 year old). We tried 1 tsp this last time and

it worked with less aggressiveness and she seems to be lengthening out slightly.

We went from a 35-70 day cycle (hers were never extremely regular) to 14-18

days. Today is 19 days. We are also about to start Tagamet in hopes of

lengthening out. If not, we may be discussing a T & A. Her throat seems to be

red and inflammed a lot. In fact, it was on Tuesday with large lymphnodes, but

no fever yet. I'm wondering how often that haens when we don't know about it

(since she can't tell us yet).

Best of luck.

Ginger

Daughter - le, 23 months ( since 7-12 months)

Son - Jay, 2 months.

~Ginger

Systems Solutions Principal, CAR Financial Services

Work: (770) 828-1397

Cell: (770) 823-2871

TREO: (404) 915-5035

Sent from my TREO; thus, please excuse any typos. (Especially with missing p's

- that key sticks!)

Re: New here and have a few questions

Hi, Candace! Your questions are all too familiar. After hearing our

son had/has (20 months old, fevering since 6 months old), we

first tried the prednisone...AWESOME. The fever went away within

hours and we went on with life. But the fevers did come more

frequently, anywhere from about a week to two weeks apart. When our

ID specialist reviewed our fever cycle/journal and saw the more

frequent fevers with the prednisone, he told us to stop using it for

every episode, but to keep it on hand for those " special " occasions

when you just can't endure a fever right then (vacations, grandma's

90th birthday party, etc...). He then had us start a cimetidine

regimen, stating something like 40% of patients will have some

sort of reponse to it, whether the fevers stop all together, or are

shorter in duration, not as high, spaced further apart, etc. We

started the cimetidine in January and were about to quit it because

our son got his fever the next week and we thought it

obviously must not work for him then...but the doctor said it can

take several weeks to a few months for it to have an effect, so we

stuck with it, and our son did have a 10 week break after that

episode...but then the fevers came back and resumed their 3-4 week

cycle. We have noticed they have been 1-2 days shorter and not as

high (as you stated). He is due for a fever right now acutally, but

it hasn't come yet? Last month our specialist increased his

cimetidine dosage, so maybe that is affecting this cycle? He also

checks his liver enzyme levels/function about every 3-4 months. Our

doctor has told us that the cimetidine is a relatively harmless

medicine. He had us meet with a pediatric ENT and has now encouraged

us that the T & A would be our next thing to try and see if we can

stop the fevers all together...or for however long...or maybe not at

all. We are ready for that next step whether it works or not. We

are going to try and get it scheduled early fall as we are due with

a baby girl two weeks from today and want to wait till we get our

bearings with her, etc... Wish we could've gotten it done before her

birth so we wouldn't (hopefully) have to deal with a fever episode

and a newborn at the same time!!

Yes, we worry about using the fever meds long-term, too. With one

of his fever episodes earlier this spring, we noticed 5 days into it

(the fever was actually on its way out) that he was walking funny,

as if one of his hips wasn't working or was locked up. He didn't

seem to be in pain because he would do the best he could and wasn't

fussy about it, but he wouldn't run...and he RUNS everywhere

usually. The pediatrician said give it a week, and it did go

away...but our ID specialist seemed a little curious and " befuddled "

by it. We haven't seen that effect since, but are curious if it was

related to the (or whatever PFS he may have going on) or by

the constant rotation of Tylenol/Ibuprofen for so many consecutive

days, or because the fever gets so incredibly high it somehow

affects his brain (which we've been told countless times no, but we

still wonder)??

Anyway, welcome to the group! I know when I found this site, I was

thrilled. It's like my own world of people who " get " what I'm

talking about. I had never ever even heard of or any of the

PFS's prior to our son's diagnosis. And when I tell people in our

life about what's going on, I just don't think they get it...but

here they do. I still find myself in constant thought/wonder about

why did this happen, what's the link/connection (if any) we all

share, will our next child have it??

Take care,

Kristi

>

> Hi, I am new to this group. I have a 22 month old that was

diagnosed with close to a year ago. He has had fevers since 5

months of age. His fevers were coming every 4-6 weeks with the

longest span of 7 weeks, going as high as 104.5 and lasting 4 days.

We started Cimetidine treatment last year and quickly noted that the

episodes only lasted 2.5 days, instead of 4 days and the fevers only

went above 103, never 104. We tried stopping the meds. to see what

would happen (hoping that things would not get worse). They

immediately reverted back to the 4 days and 104.5. So, we went back

on the meds. We tried our first dose of Prednisone 4 weeks ago and

it did stop the fever that time, sort of. It took 8-10 hours to

completely resolve his temperature, but for the entire weekend he

acted as if he still had a fever. He was lethargic, crying for

mommy, sleeping more, glassy eyes, etc. We kept checking his temp.,

certain that it was up again, but every time it was normal.

>

> Then, 2 weeks later he had another episode. It was worse than

ever. Fever meds did not bring it down as well as previous times

and he was just an all around miserable baby. He usually is

miserable, as all feverish kids are, but this was 2-3 times worse

than we had seen.

>

> Then, 2 weeks later (this past weekend), he had another episode.

This one still came too soon, but wasn't as bad as the last one. It

only lasted 2.5 days, as we are still using Cimetidine.

>

> Here are my questions:

>

> 1. In all my research I see Cimetidine listed as a treatment for

fevers. But I never see what we experience, that it doesn't stop the

fevers, but lowers the temp. and duration. Anybody else experience

this? What is the purpose of the Cimetidine? Is it really supposed

to stop the fevers, or just help them like it does with us? Anybody

worried about this med. long-term?

>

> 2. Anyone worried about giving fever meds. long-term and what

damage they might be causing?

>

> 3. Anyone see the same results from Prednisone? I am so scared to

use it again. What if the fevers come every week then, since they

used to come every 4 weeks and the Prednisone caused them to come

every 2, who's to say the next time they wouldn't come every 1?

Will we always get the fevers every 2 weeks now that we used

Prednisone? That didn't help us!!!! Anyone note the child still

acting feverish after Prednisone?

>

> 3. I too have researched about tonsillectomy and our ped. is all

for it. We have an appt. w/ENT July 26, so am praying he will be in

agreement. How many of you have done this surgery? What were your

results?

>

> 4. I have seen some postings about NIH and being in a study. How

did you get in the study? We live in CO and were diagnosed by

Children's Hospital Infectious Disease. Is there a reason to go to

NIH?

>

> 5. I have another special child that is on a feeding tube and has

many dev. delays. She is 6 and we will be taking her to 's

Hopkins soon to see if they can help her learn to eat and if they

can find a diagnosis for her. I am now wondering if there would be

a reason to have someone look at my baby with PFAP? Anyone go to

's Hopkins or anywhere else for diagnosis or a second opinion?

>

> Thanks,

> -Candace

> God is good all the time, all the time God is good.

> For I know the plans I have for you, " declares the LORD, " plans to

prosper you and not to harm you, plans to give you hope and a

future. 29:11 (NIV)

> http://www.fathersloveletter.com/flltextenglish.html

>

>

[Guest guest]

A question about Cimetidine (Tagamet)

What is the dose that doctors are prescribing for this

medication? Are you giving it every day?

Thanks so much

Jen Harvey

Mom of Eli age 2 1/2

--- " Hackett, Ginger " <ginger.hackett@...>

wrote:

> Kristi, Good luck with the new baby. I'd recommend

> using the Pridnisone for fevers near the birth to

> keep your energy level up enough to care for them

> both. Dani's had three fevers, two stomach flus,

> and thrush (don't know why?) in Jay's first 7 weeks.

> Jay is starting to get over his colic - he actually

> played for 30 minutes today with a smile!

>

> Candace, make sure you are giving the right dose of

> Prednisone for your child. They may all be

> different, but Dani was originally prwscribed 2

> ml/kg (that translated to 2 tsp fir a 32 lb 2 year

> old). We tried 1 tsp this last time and it worked

> with less aggressiveness and she seems to be

> lengthening out slightly. We went from a 35-70 day

> cycle (hers were never extremely regular) to 14-18

> days. Today is 19 days. We are also about to start

> Tagamet in hopes of lengthening out. If not, we may

> be discussing a T & A. Her throat seems to be red and

> inflammed a lot. In fact, it was on Tuesday with

> large lymphnodes, but no fever yet. I'm wondering

> how often that haens when we don't know about it

> (since she can't tell us yet).

>

> Best of luck.

>

> Ginger

>

> Daughter - le, 23 months ( since 7-12

> months)

>

> Son - Jay, 2 months.

>

>

>

> ~Ginger

> Systems Solutions Principal, CAR Financial Services

> Work: (770) 828-1397

> Cell: (770) 823-2871

> TREO: (404) 915-5035

>

> Sent from my TREO; thus, please excuse any typos.

> (Especially with missing p's - that key sticks!)

>

>

> Re: New here and have a few

> questions

>

> Hi, Candace! Your questions are all too familiar.

> After hearing our

> son had/has (20 months old, fevering since 6

> months old), we

> first tried the prednisone...AWESOME. The fever

> went away within

> hours and we went on with life. But the fevers did

> come more

> frequently, anywhere from about a week to two weeks

> apart. When our

> ID specialist reviewed our fever cycle/journal and

> saw the more

> frequent fevers with the prednisone, he told us to

> stop using it for

> every episode, but to keep it on hand for those

> " special " occasions

> when you just can't endure a fever right then

> (vacations, grandma's

> 90th birthday party, etc...). He then had us start

> a cimetidine

> regimen, stating something like 40% of

> patients will have some

> sort of reponse to it, whether the fevers stop all

> together, or are

> shorter in duration, not as high, spaced further

> apart, etc. We

> started the cimetidine in January and were about to

> quit it because

> our son got his fever the next week and we

> thought it

> obviously must not work for him then...but the

> doctor said it can

> take several weeks to a few months for it to have an

> effect, so we

> stuck with it, and our son did have a 10 week break

> after that

> episode...but then the fevers came back and resumed

> their 3-4 week

> cycle. We have noticed they have been 1-2 days

> shorter and not as

> high (as you stated). He is due for a fever right

> now acutally, but

> it hasn't come yet? Last month our specialist

> increased his

> cimetidine dosage, so maybe that is affecting this

> cycle? He also

> checks his liver enzyme levels/function about every

> 3-4 months. Our

> doctor has told us that the cimetidine is a

> relatively harmless

> medicine. He had us meet with a pediatric ENT and

> has now encouraged

> us that the T & A would be our next thing to try and

> see if we can

> stop the fevers all together...or for however

> long...or maybe not at

> all. We are ready for that next step whether it

> works or not. We

> are going to try and get it scheduled early fall as

> we are due with

> a baby girl two weeks from today and want to wait

> till we get our

> bearings with her, etc... Wish we could've gotten it

> done before her

> birth so we wouldn't (hopefully) have to deal with a

> fever episode

> and a newborn at the same time!!

>

> Yes, we worry about using the fever meds long-term,

> too. With one

> of his fever episodes earlier this spring, we

> noticed 5 days into it

> (the fever was actually on its way out) that he was

> walking funny,

> as if one of his hips wasn't working or was locked

> up. He didn't

> seem to be in pain because he would do the best he

> could and wasn't

> fussy about it, but he wouldn't run...and he RUNS

> everywhere

> usually. The pediatrician said give it a week, and

> it did go

> away...but our ID specialist seemed a little curious

> and " befuddled "

> by it. We haven't seen that effect since, but are

> curious if it was

> related to the (or whatever PFS he may have

> going on) or by

> the constant rotation of Tylenol/Ibuprofen for so

> many consecutive

> days, or because the fever gets so incredibly high

> it somehow

> affects his brain (which we've been told countless

> times no, but we

> still wonder)??

>

> Anyway, welcome to the group! I know when I found

> this site, I was

> thrilled. It's like my own world of people who

> " get " what I'm

> talking about. I had never ever even heard of

> or any of the

> PFS's prior to our son's diagnosis. And when I tell

> people in our

> life about what's going on, I just don't think they

> get it...but

> here they do. I still find myself in constant

> thought/wonder about

> why did this happen, what's the link/connection (if

> any) we all

> share, will our next child have it??

>

> Take care,

> Kristi

>

>

>

> >

> > Hi, I am new to this group. I have a 22 month old

> that was

> diagnosed with close to a year ago. He has

> had fevers since 5

> months of age. His fevers were coming every 4-6

> weeks with the

> longest span of 7 weeks, going as high as 104.5 and

> lasting 4 days.

> We started Cimetidine treatment last year and

> quickly noted that the

> episodes only lasted 2.5 days, instead of 4 days and

> the fevers only

> went above 103, never 104. We tried stopping the

> meds. to see what

> would happen (hoping that things would not get

> worse). They

> immediately reverted back to the 4 days and 104.5.

> So, we went back

> on the meds. We tried our first dose of Prednisone 4

> weeks ago and

> it did stop the fever that time, sort of. It took

> 8-10 hours to

> completely resolve his temperature, but for the

> entire weekend he

> acted as if he still had a fever. He was lethargic,

> crying for

> mommy, sleeping more, glassy eyes, etc. We kept

> checking his temp.,

> certain that it was up again, but every time it was

> normal.

=== message truncated ===

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[Guest guest]

My doctor prescribed 1/2 teaspoon twice daily for a 32 pound 2 year old of

Cimetidine. It is given twice daily regardless of fever. Our doctor didn't

mention checking liver enzymes - but we'll be pushing for this when we go back

in 3 months.

Dose for Prednisone is 1 teaspoon upon spiking fever. We usually wait for 102 -

to be sure it is . We can give a second dose if the fever returns within

about 48 hours. It was our specialists opinion that if the fever returned

within 3 days or so, that it was something else. We haven't had that issue - so

we haven't crossed that bridge yet. We only once had the fever return (before

we were told we could second dose) and that was the first time we used

Pednisone/Orapred.

~Ginger

Systems Solutions Principal, CAR Financial Services

Work: (770) 828-1397

Cell: (770) 823-2871

TREO: (404) 915-5035

Sent from my TREO; thus, please excuse any typos. (Especially with missing p's

- that key sticks!)

Re: New here and have a few

> questions

>

> Hi, Candace! Your questions are all too familiar.

> After hearing our

> son had/has (20 months old, fevering since 6

> months old), we

> first tried the prednisone...AWESOME. The fever

> went away within

> hours and we went on with life. But the fevers did

> come more

> frequently, anywhere from about a week to two weeks

> apart. When our

> ID specialist reviewed our fever cycle/journal and

> saw the more

> frequent fevers with the prednisone, he told us to

> stop using it for

> every episode, but to keep it on hand for those

> " special " occasions

> when you just can't endure a fever right then

> (vacations, grandma's

> 90th birthday party, etc...). He then had us start

> a cimetidine

> regimen, stating something like 40% of

> patients will have some

> sort of reponse to it, whether the fevers stop all

> together, or are

> shorter in duration, not as high, spaced further

> apart, etc. We

> started the cimetidine in January and were about to

> quit it because

> our son got his fever the next week and we

> thought it

> obviously must not work for him then...but the

> doctor said it can

> take several weeks to a few months for it to have an

> effect, so we

> stuck with it, and our son did have a 10 week break

> after that

> episode...but then the fevers came back and resumed

> their 3-4 week

> cycle. We have noticed they have been 1-2 days

> shorter and not as

> high (as you stated). He is due for a fever right

> now acutally, but

> it hasn't come yet? Last month our specialist

> increased his

> cimetidine dosage, so maybe that is affecting this

> cycle? He also

> checks his liver enzyme levels/function about every

> 3-4 months. Our

> doctor has told us that the cimetidine is a

> relatively harmless

> medicine. He had us meet with a pediatric ENT and

> has now encouraged

> us that the T & A would be our next thing to try and

> see if we can

> stop the fevers all together...or for however

> long...or maybe not at

> all. We are ready for that next step whether it

> works or not. We

> are going to try and get it scheduled early fall as

> we are due with

> a baby girl two weeks from today and want to wait

> till we get our

> bearings with her, etc... Wish we could've gotten it

> done before her

> birth so we wouldn't (hopefully) have to deal with a

> fever episode

> and a newborn at the same time!!

>

> Yes, we worry about using the fever meds long-term,

> too. With one

> of his fever episodes earlier this spring, we

> noticed 5 days into it

> (the fever was actually on its way out) that he was

> walking funny,

> as if one of his hips wasn't working or was locked

> up. He didn't

> seem to be in pain because he would do the best he

> could and wasn't

> fussy about it, but he wouldn't run...and he RUNS

> everywhere

> usually. The pediatrician said give it a week, and

> it did go

> away...but our ID specialist seemed a little curious

> and " befuddled "

> by it. We haven't seen that effect since, but are

> curious if it was

> related to the (or whatever PFS he may have

> going on) or by

> the constant rotation of Tylenol/Ibuprofen for so

> many consecutive

> days, or because the fever gets so incredibly high

> it somehow

> affects his brain (which we've been told countless

> times no, but we

> still wonder)??

>

> Anyway, welcome to the group! I know when I found

> this site, I was

> thrilled. It's like my own world of people who

> " get " what I'm

> talking about. I had never ever even heard of

> or any of the

> PFS's prior to our son's diagnosis. And when I tell

> people in our

> life about what's going on, I just don't think they

> get it...but

> here they do. I still find myself in constant

> thought/wonder about

> why did this happen, what's the link/connection (if

> any) we all

> share, will our next child have it??

>

> Take care,

> Kristi

>

>

>

> >

> > Hi, I am new to this group. I have a 22 month old

> that was

> diagnosed with close to a year ago. He has

> had fevers since 5

> months of age. His fevers were coming every 4-6

> weeks with the

> longest span of 7 weeks, going as high as 104.5 and

> lasting 4 days.

> We started Cimetidine treatment last year and

> quickly noted that the

> episodes only lasted 2.5 days, instead of 4 days and

> the fevers only

> went above 103, never 104. We tried stopping the

> meds. to see what

> would happen (hoping that things would not get

> worse). They

> immediately reverted back to the 4 days and 104.5.

> So, we went back

> on the meds. We tried our first dose of Prednisone 4

> weeks ago and

> it did stop the fever that time, sort of. It took

> 8-10 hours to

> completely resolve his temperature, but for the

> entire weekend he

> acted as if he still had a fever. He was lethargic,

> crying for

> mommy, sleeping more, glassy eyes, etc. We kept

> checking his temp.,

> certain that it was up again, but every time it was

> normal.

=== message truncated ===

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[Guest guest]

Hi, Jen. Our son (20 months) is taking the tablet form (Tagamet)

because he gags/refluxes liquid meds so much (and actually, the

Tagamet is cheaper -for us- over the counter than the liquid we

would get from the pharmacy). We just crush it into a powder and

put it in applesauce, or baby fruit, or pudding, or whatever, and he

takes it pretty well. He is now about 28 pounds and gets 3/4 a

tablet every twelve hours...usually with breakfast and at

bedtime...daily. You can also get the liquid cimetidine from your

pharmicist with a prescription. We were hoping it would help the

fevers fo away, but any relief of symptoms at all has been very

welcomed!

Take care,

Kristi

> > >

> > > Hi, I am new to this group. I have a 22 month old

> > that was

> > diagnosed with close to a year ago. He has

> > had fevers since 5

> > months of age. His fevers were coming every 4-6

> > weeks with the

> > longest span of 7 weeks, going as high as 104.5 and

> > lasting 4 days.

> > We started Cimetidine treatment last year and

> > quickly noted that the

> > episodes only lasted 2.5 days, instead of 4 days and

> > the fevers only

> > went above 103, never 104. We tried stopping the

> > meds. to see what

> > would happen (hoping that things would not get

> > worse). They

> > immediately reverted back to the 4 days and 104.5.

> > So, we went back

> > on the meds. We tried our first dose of Prednisone 4

> > weeks ago and

> > it did stop the fever that time, sort of. It took

> > 8-10 hours to

> > completely resolve his temperature, but for the

> > entire weekend he

> > acted as if he still had a fever. He was lethargic,

> > crying for

> > mommy, sleeping more, glassy eyes, etc. We kept

> > checking his temp.,

> > certain that it was up again, but every time it was

> > normal.

> === message truncated ===

>

>

>

>

_____________________________________________________________________

_______________

> Shape in your own image. Join our Network Research Panel

today! http://surveylink./gmrs/_panel_invite.asp?a=7

>

[Guest guest]

Hi Candace,

Your story sounds so familiarto mine (as well as many others I'm sure). My

daughter is 27 mths olds, diagnosed about a year ago. She started fevering

around 6 mths. I am currently seeing a Ped. Rheumatologists and he has

personally never seen a child exhibit symptoms at such a young age. Not very

comforting. To shed some light on my experiences and answer some of you

questions.

1. We experienced the same as you, my daughter would fever for 3-5 days 105-107

temps the Cimetidine lowered the temps and the symptoms weren't as severe. After

a year of this I decided since it wasn't really helping her to take her off it.

My doc wanted to try it a little while longer but from what I gather it should

start working within a few months if it hasn't then it's not going to. When it

does work it stops the attacks from coming all together. We weren't fortunate

enough to have that experience.

2. I was worried about the long term use regardless of what docs say that it's

harmless, have they ever studied or followed children that have been on it at

such a long age and for so long. No they have not.

3. My doc swore that all the studies done show that there is no frequency in the

length of fever however I beg to differ. We tried it last year and the fevers

went from 28 days to 14 days to 9 days to 5 days. So we stopped. Decided to try

it again last month because her fevers were getting so high and the same thing

happened again. So we have decided that unless we or she has an important event

we will forgo giving the pred, only in extreem situations. Its not worth it to

me to sacrafice the fevers going away immediatley only to come back again so

quickly. Your only putting off the inevitable.

3. I have my self have just made an appt to discuss our options for a

tonsillectomy. From all the info I have gathered Tonsillectomy works in true

Pfapa patients. The problems lies with some children being mis diagnosed as

Pfapa, having a tonsillectomy, it doesn't work and therefore misinformation is

presented. In the pateints that it doesn't work they may not be true Pfapa but

one of the other PFS.

The specialist we are seeing says his statistics show that the Tonsillectomy

worked on every Pfapa patient, even though he makes no guarantees on the

outcome. He has been following the patients he has treated and only a few have

not had positive results but they had other issues going on later that led him

to believe it was something other than Pfapa.

4.NIH is funded by the government and they have on going studies regarding

children and several Periodic Fever Syndroms. It takes many months to get in. I

believe many people go because all the testing is done free (not on your

personal insurance) and many insurance companies do not cover DNA testing. It

depends on your situation. I held off applying to get my daughter in because my

insurance covered a few of the DNA testing for FMF, HIDS and another one can't

remember at the moment. But now my doc is suggesting getting her in because they

may be able to further evaluate her and find something he couldn't.

5. I personally went to 4 docs for an opinions with my daughter because the

first 2 were too quick to diagnose her as PFapa without rulling anything else

out. I feel more confident that my dauther does have Pfapa because so far all

her test have come back negative and her blood work is consistent with Pfapa,

Although that really isn't any comfort because so little is known about the

disorder.

I hope this helps. I know it is truly frustrating because there is no clear path

even when you do find out what your child has. Follow you gut, you know you

child. But educate yourself as much as possible. If I hadn't done so much

research I would have any reason to question what some of the docs were telling

me. Now I have gone back and armed with info and shed some light on the topic

for them and they apoligized for assuming something they didn't know for sure.

Tammielee

mom to 4 & Alyssa 2 (Pfapa)

New here and have a few questions

Hi, I am new to this group. I have a 22 month old that was diagnosed with

close to a year ago. He has had fevers since 5 months of age. His fevers were

coming every 4-6 weeks with the longest span of 7 weeks, going as high as 104.5

and lasting 4 days. We started Cimetidine treatment last year and quickly noted

that the episodes only lasted 2.5 days, instead of 4 days and the fevers only

went above 103, never 104. We tried stopping the meds. to see what would happen

(hoping that things would not get worse). They immediately reverted back to the

4 days and 104.5. So, we went back on the meds. We tried our first dose of

Prednisone 4 weeks ago and it did stop the fever that time, sort of. It took

8-10 hours to completely resolve his temperature, but for the entire weekend he

acted as if he still had a fever. He was lethargic, crying for mommy, sleeping

more, glassy eyes, etc. We kept checking his temp., certain that it was up

again, but every time it

was normal.

Then, 2 weeks later he had another episode. It was worse than ever. Fever meds

did not bring it down as well as previous times and he was just an all around

miserable baby. He usually is miserable, as all feverish kids are, but this was

2-3 times worse than we had seen.

Then, 2 weeks later (this past weekend), he had another episode. This one still

came too soon, but wasn't as bad as the last one. It only lasted 2.5 days, as we

are still using Cimetidine.

Here are my questions:

1. In all my research I see Cimetidine listed as a treatment for fevers. But I

never see what we experience, that it doesn't stop the fevers, but lowers the

temp. and duration. Anybody else experience this? What is the purpose of the

Cimetidine? Is it really supposed to stop the fevers, or just help them like it

does with us? Anybody worried about this med. long-term?

2. Anyone worried about giving fever meds. long-term and what damage they might

be causing?

3. Anyone see the same results from Prednisone? I am so scared to use it again.

What if the fevers come every week then, since they used to come every 4 weeks

and the Prednisone caused them to come every 2, who's to say the next time they

wouldn't come every 1? Will we always get the fevers every 2 weeks now that we

used Prednisone? That didn't help us!!!! Anyone note the child still acting

feverish after Prednisone?

3. I too have researched about tonsillectomy and our ped. is all for it. We have

an appt. w/ENT July 26, so am praying he will be in agreement. How many of you

have done this surgery? What were your results?

4. I have seen some postings about NIH and being in a study. How did you get in

the study? We live in CO and were diagnosed by Children's Hospital Infectious

Disease. Is there a reason to go to NIH?

5. I have another special child that is on a feeding tube and has many dev.

delays. She is 6 and we will be taking her to 's Hopkins soon to see if they

can help her learn to eat and if they can find a diagnosis for her. I am now

wondering if there would be a reason to have someone look at my baby with PFAP?

Anyone go to 's Hopkins or anywhere else for diagnosis or a second opinion?

Thanks,

-Candace

God is good all the time, all the time God is good.

For I know the plans I have for you, " declares the LORD, " plans to prosper you

and not to harm you, plans to give you hope and a future. 29:11 (NIV)

http://www.fathersl oveletter. com/flltextengli sh.html

[Guest guest]

Tammielee,

Thank you for your reply. I feel that I will be about where you are once my

daghter is about the same age (about 3-4 months from now). We've ruled out a

few other diseases and are just starting Cimetidine, but I, too, am worried that

it isn't going to eliminate the fevers. I'm worried about giving a drug twice

daily that has shown to be hard on the liver.

My daughter will likely start her next cycle tomorrow since she is crabby

tonight and running about 100.5 now.

Can I also ask where you did research on this? I search internet and read the

boards a lot, but can't seem to find much concrete. Also, how do you find your

doctors?

Thank you again - sounds like your story and ours are similar.

Ginger, Atlanta, GA

Daughter - le, 23 months ( since 7-12 months)

Son - Jay, 2 months.

~Ginger

Systems Solutions Principal, CAR Financial Services

Work: (770) 828-1397

Cell: (770) 823-2871

TREO: (404) 915-5035

Sent from my TREO; thus, please excuse any typos. (Especially with missing p's

- that key sticks!)

Re: New here and have a few questions

Hi Candace,

Your story sounds so familiarto mine (as well as many others I'm sure). My

daughter is 27 mths olds, diagnosed about a year ago. She started fevering

around 6 mths. I am currently seeing a Ped. Rheumatologists and he has

personally never seen a child exhibit symptoms at such a young age. Not very

comforting. To shed some light on my experiences and answer some of you

questions.

1. We experienced the same as you, my daughter would fever for 3-5 days 105-107

temps the Cimetidine lowered the temps and the symptoms weren't as severe. After

a year of this I decided since it wasn't really helping her to take her off it.

My doc wanted to try it a little while longer but from what I gather it should

start working within a few months if it hasn't then it's not going to. When it

does work it stops the attacks from coming all together. We weren't fortunate

enough to have that experience.

2. I was worried about the long term use regardless of what docs say that it's

harmless, have they ever studied or followed children that have been on it at

such a long age and for so long. No they have not.

3. My doc swore that all the studies done show that there is no frequency in the

length of fever however I beg to differ. We tried it last year and the fevers

went from 28 days to 14 days to 9 days to 5 days. So we stopped. Decided to try

it again last month because her fevers were getting so high and the same thing

happened again. So we have decided that unless we or she has an important event

we will forgo giving the pred, only in extreem situations. Its not worth it to

me to sacrafice the fevers going away immediatley only to come back again so

quickly. Your only putting off the inevitable.

3. I have my self have just made an appt to discuss our options for a

tonsillectomy. From all the info I have gathered Tonsillectomy works in true

Pfapa patients. The problems lies with some children being mis diagnosed as

Pfapa, having a tonsillectomy, it doesn't work and therefore misinformation is

presented. In the pateints that it doesn't work they may not be true Pfapa but

one of the other PFS.

The specialist we are seeing says his statistics show that the Tonsillectomy

worked on every Pfapa patient, even though he makes no guarantees on the

outcome. He has been following the patients he has treated and only a few have

not had positive results but they had other issues going on later that led him

to believe it was something other than Pfapa.

4.NIH is funded by the government and they have on going studies regarding

children and several Periodic Fever Syndroms. It takes many months to get in. I

believe many people go because all the testing is done free (not on your

personal insurance) and many insurance companies do not cover DNA testing. It

depends on your situation. I held off applying to get my daughter in because my

insurance covered a few of the DNA testing for FMF, HIDS and another one can't

remember at the moment. But now my doc is suggesting getting her in because they

may be able to further evaluate her and find something he couldn't.

5. I personally went to 4 docs for an opinions with my daughter because the

first 2 were too quick to diagnose her as PFapa without rulling anything else

out. I feel more confident that my dauther does have Pfapa because so far all

her test have come back negative and her blood work is consistent with Pfapa,

Although that really isn't any comfort because so little is known about the

disorder.

I hope this helps. I know it is truly frustrating because there is no clear path

even when you do find out what your child has. Follow you gut, you know you

child. But educate yourself as much as possible. If I hadn't done so much

research I would have any reason to question what some of the docs were telling

me. Now I have gone back and armed with info and shed some light on the topic

for them and they apoligized for assuming something they didn't know for sure.

Tammielee

mom to 4 & Alyssa 2 (Pfapa)

New here and have a few questions

Hi, I am new to this group. I have a 22 month old that was diagnosed with

close to a year ago. He has had fevers since 5 months of age. His fevers were

coming every 4-6 weeks with the longest span of 7 weeks, going as high as 104.5

and lasting 4 days. We started Cimetidine treatment last year and quickly noted

that the episodes only lasted 2.5 days, instead of 4 days and the fevers only

went above 103, never 104. We tried stopping the meds. to see what would happen

(hoping that things would not get worse). They immediately reverted back to the

4 days and 104.5. So, we went back on the meds. We tried our first dose of

Prednisone 4 weeks ago and it did stop the fever that time, sort of. It took

8-10 hours to completely resolve his temperature, but for the entire weekend he

acted as if he still had a fever. He was lethargic, crying for mommy, sleeping

more, glassy eyes, etc. We kept checking his temp., certain that it was up

again, but every time it

was normal.

Then, 2 weeks later he had another episode. It was worse than ever. Fever meds

did not bring it down as well as previous times and he was just an all around

miserable baby. He usually is miserable, as all feverish kids are, but this was

2-3 times worse than we had seen.

Then, 2 weeks later (this past weekend), he had another episode. This one still

came too soon, but wasn't as bad as the last one. It only lasted 2.5 days, as we

are still using Cimetidine.

Here are my questions:

1. In all my research I see Cimetidine listed as a treatment for fevers. But I

never see what we experience, that it doesn't stop the fevers, but lowers the

temp. and duration. Anybody else experience this? What is the purpose of the

Cimetidine? Is it really supposed to stop the fevers, or just help them like it

does with us? Anybody worried about this med. long-term?

2. Anyone worried about giving fever meds. long-term and what damage they might

be causing?

3. Anyone see the same results from Prednisone? I am so scared to use it again.

What if the fevers come every week then, since they used to come every 4 weeks

and the Prednisone caused them to come every 2, who's to say the next time they

wouldn't come every 1? Will we always get the fevers every 2 weeks now that we

used Prednisone? That didn't help us!!!! Anyone note the child still acting

feverish after Prednisone?

3. I too have researched about tonsillectomy and our ped. is all for it. We have

an appt. w/ENT July 26, so am praying he will be in agreement. How many of you

have done this surgery? What were your results?

4. I have seen some postings about NIH and being in a study. How did you get in

the study? We live in CO and were diagnosed by Children's Hospital Infectious

Disease. Is there a reason to go to NIH?

5. I have another special child that is on a feeding tube and has many dev.

delays. She is 6 and we will be taking her to 's Hopkins soon to see if they

can help her learn to eat and if they can find a diagnosis for her. I am now

wondering if there would be a reason to have someone look at my baby with PFAP?

Anyone go to 's Hopkins or anywhere else for diagnosis or a second opinion?

Thanks,

-Candace

God is good all the time, all the time God is good.

For I know the plans I have for you, " declares the LORD, " plans to prosper you

and not to harm you, plans to give you hope and a future. 29:11 (NIV)

http://www.fathersl oveletter. com/flltextengli sh.html

[Guest guest]

I will go through my info tomorrow and try and forward you some of the sites I

found my info, (nights and nights of endless research). But most of my info came

from 3 of the Docs I consulted with. All three are very familiar with PFS and

Pfapa and based on the stats they have shown me from their documentation. 2 of

the doc I found were referrals from this group one was from my pediatrician and

another was (you may laugh) but I watch alot the the discover health channel,

the Show diagnosis unknown had a story on one night similiar to my daughters

while this child ended up having something else I was impressed with the story

and the care and attention this doctor gave his patient and he just happened to

be in my area. So I called the next day and asked if he was familiar with any of

this, he was, and made an appt. One of the docs I am currently seeing has been

down to NIH and was involved in many of the earlier studies when they group

first started.

I also decided to stop the Tagament because it wasn't really working and the

possible liver damage

Tammielee

New here and have a few questions

Hi, I am new to this group. I have a 22 month old that was diagnosed with

close to a year ago. He has had fevers since 5 months of age. His fevers were

coming every 4-6 weeks with the longest span of 7 weeks, going as high as 104.5

and lasting 4 days. We started Cimetidine treatment last year and quickly noted

that the episodes only lasted 2.5 days, instead of 4 days and the fevers only

went above 103, never 104. We tried stopping the meds. to see what would happen

(hoping that things would not get worse). They immediately reverted back to the

4 days and 104.5. So, we went back on the meds. We tried our first dose of

Prednisone 4 weeks ago and it did stop the fever that time, sort of. It took

8-10 hours to completely resolve his temperature, but for the entire weekend he

acted as if he still had a fever. He was lethargic, crying for mommy, sleeping

more, glassy eyes, etc. We kept checking his temp., certain that it was up

again, but every time it

was normal.

Then, 2 weeks later he had another episode. It was worse than ever. Fever meds

did not bring it down as well as previous times and he was just an all around

miserable baby. He usually is miserable, as all feverish kids are, but this was

2-3 times worse than we had seen.

Then, 2 weeks later (this past weekend), he had another episode. This one still

came too soon, but wasn't as bad as the last one. It only lasted 2.5 days, as we

are still using Cimetidine.

Here are my questions:

1. In all my research I see Cimetidine listed as a treatment for fevers. But I

never see what we experience, that it doesn't stop the fevers, but lowers the

temp. and duration. Anybody else experience this? What is the purpose of the

Cimetidine? Is it really supposed to stop the fevers, or just help them like it

does with us? Anybody worried about this med. long-term?

2. Anyone worried about giving fever meds. long-term and what damage they might

be causing?

3. Anyone see the same results from Prednisone? I am so scared to use it again.

What if the fevers come every week then, since they used to come every 4 weeks

and the Prednisone caused them to come every 2, who's to say the next time they

wouldn't come every 1? Will we always get the fevers every 2 weeks now that we

used Prednisone? That didn't help us!!!! Anyone note the child still acting

feverish after Prednisone?

3. I too have researched about tonsillectomy and our ped. is all for it. We have

an appt. w/ENT July 26, so am praying he will be in agreement. How many of you

have done this surgery? What were your results?

4. I have seen some postings about NIH and being in a study. How did you get in

the study? We live in CO and were diagnosed by Children's Hospital Infectious

Disease. Is there a reason to go to NIH?

5. I have another special child that is on a feeding tube and has many dev.

delays. She is 6 and we will be taking her to 's Hopkins soon to see if they

can help her learn to eat and if they can find a diagnosis for her. I am now

wondering if there would be a reason to have someone look at my baby with PFAP?

Anyone go to 's Hopkins or anywhere else for diagnosis or a second opinion?

Thanks,

-Candace

God is good all the time, all the time God is good.

For I know the plans I have for you, " declares the LORD, " plans to prosper you

and not to harm you, plans to give you hope and a future. 29:11 (NIV)

http://www.fathersl oveletter. com/flltextengli sh.html

[Guest guest]

Thank you.

~Ginger

Systems Solutions Principal, CAR Financial Services

Work: (770) 828-1397

Cell: (770) 823-2871

TREO: (404) 915-5035

Sent from my TREO; thus, please excuse any typos. (Especially with missing p's

- that key sticks!)

Re: New here and have a few questions

I will go through my info tomorrow and try and forward you some of the sites I

found my info, (nights and nights of endless research). But most of my info came

from 3 of the Docs I consulted with. All three are very familiar with PFS and

Pfapa and based on the stats they have shown me from their documentation. 2 of

the doc I found were referrals from this group one was from my pediatrician and

another was (you may laugh) but I watch alot the the discover health channel,

the Show diagnosis unknown had a story on one night similiar to my daughters

while this child ended up having something else I was impressed with the story

and the care and attention this doctor gave his patient and he just happened to

be in my area. So I called the next day and asked if he was familiar with any of

this, he was, and made an appt. One of the docs I am currently seeing has been

down to NIH and was involved in many of the earlier studies when they group

first started.

I also decided to stop the Tagament because it wasn't really working and the

possible liver damage

Tammielee

New here and have a few questions

Hi, I am new to this group. I have a 22 month old that was diagnosed with

close to a year ago. He has had fevers since 5 months of age. His fevers were

coming every 4-6 weeks with the longest span of 7 weeks, going as high as 104.5

and lasting 4 days. We started Cimetidine treatment last year and quickly noted

that the episodes only lasted 2.5 days, instead of 4 days and the fevers only

went above 103, never 104. We tried stopping the meds. to see what would happen

(hoping that things would not get worse). They immediately reverted back to the

4 days and 104.5. So, we went back on the meds. We tried our first dose of

Prednisone 4 weeks ago and it did stop the fever that time, sort of. It took

8-10 hours to completely resolve his temperature, but for the entire weekend he

acted as if he still had a fever. He was lethargic, crying for mommy, sleeping

more, glassy eyes, etc. We kept checking his temp., certain that it was up

again, but every time it

was normal.

Then, 2 weeks later he had another episode. It was worse than ever. Fever meds

did not bring it down as well as previous times and he was just an all around

miserable baby. He usually is miserable, as all feverish kids are, but this was

2-3 times worse than we had seen.

Then, 2 weeks later (this past weekend), he had another episode. This one still

came too soon, but wasn't as bad as the last one. It only lasted 2.5 days, as we

are still using Cimetidine.

Here are my questions:

1. In all my research I see Cimetidine listed as a treatment for fevers. But I

never see what we experience, that it doesn't stop the fevers, but lowers the

temp. and duration. Anybody else experience this? What is the purpose of the

Cimetidine? Is it really supposed to stop the fevers, or just help them like it

does with us? Anybody worried about this med. long-term?

2. Anyone worried about giving fever meds. long-term and what damage they might

be causing?

3. Anyone see the same results from Prednisone? I am so scared to use it again.

What if the fevers come every week then, since they used to come every 4 weeks

and the Prednisone caused them to come every 2, who's to say the next time they

wouldn't come every 1? Will we always get the fevers every 2 weeks now that we

used Prednisone? That didn't help us!!!! Anyone note the child still acting

feverish after Prednisone?

3. I too have researched about tonsillectomy and our ped. is all for it. We have

an appt. w/ENT July 26, so am praying he will be in agreement. How many of you

have done this surgery? What were your results?

4. I have seen some postings about NIH and being in a study. How did you get in

the study? We live in CO and were diagnosed by Children's Hospital Infectious

Disease. Is there a reason to go to NIH?

5. I have another special child that is on a feeding tube and has many dev.

delays. She is 6 and we will be taking her to 's Hopkins soon to see if they

can help her learn to eat and if they can find a diagnosis for her. I am now

wondering if there would be a reason to have someone look at my baby with PFAP?

Anyone go to 's Hopkins or anywhere else for diagnosis or a second opinion?

Thanks,

-Candace

God is good all the time, all the time God is good.

For I know the plans I have for you, " declares the LORD, " plans to prosper you

and not to harm you, plans to give you hope and a future. 29:11 (NIV)

http://www.fathersl oveletter. com/flltextengli sh.html

[Guest guest]

1. In all my research I see Cimetidine listed as a treatment for

fevers. But I

never see what we experience, that it doesn't stop the fevers, but

lowers the

temp. and duration. Anybody else experience this? What is the purpose

of the

Cimetidine? Is it really supposed to stop the fevers, or just help

them like it

does with us? Anybody worried about this med. long-term?

Not really sure about the cimetidine . . . we haven't tried it as

yet . . . thinking about it though.

2. Anyone worried about giving fever meds. long-term and what damage

they might

be causing?

Absolutely . . . every time he fevers I worry and worry and worry

some more.

3. Anyone see the same results from Prednisone? I am so scared to use

it again.

What if the fevers come every week then, since they used to come

every 4 weeks

and the Prednisone caused them to come every 2, who's to say the next

time they

wouldn't come every 1? Will we always get the fevers every 2 weeks

now that we

used Prednisone? That didn't help us!!!! Anyone note the child still

acting

feverish after Prednisone?

the first time we gave the pred. his fever came back in 4 days. We

gave it again and it came back in 4 days so we gave it again. Then it

stayed away for a few weeks. I would suggest that if you are

comfortable doing it then to keep trying it. See if it evens out with

your child.

3. I too have researched about tonsillectomy and our ped. is all for

it. We have

an appt. w/ENT July 26, so am praying he will be in agreement. How

many of you

have done this surgery? What were your results?

Nope - not even considering it. Maybe when he's older - teens. I've

heard - could be wrong - that it's like a 30% fix rate. That's not

high enough for me personally. Maybe if it was 70 I'd do it.

4. I have seen some postings about NIH and being in a study. How did

you get in

the study? We live in CO and were diagnosed by Children's Hospital

Infectious

Disease. Is there a reason to go to NIH?

We got in with a good Ped.Rhuem in Texas and feel confident in her.

But a lot of people do go to NIH.

5. I have another special child that is on a feeding tube and has

many dev.

delays. She is 6 and we will be taking her to 's Hopkins soon to

see if they

can help her learn to eat and if they can find a diagnosis for her. I

am now

wondering if there would be a reason to have someone look at my baby

with PFAP?

Anyone go to 's Hopkins or anywhere else for diagnosis or a

second opinion?

We went to ish Rite in Dallas with Aidan - that's where we found

the Ped.Rhuem. I whole heartedly agree with seeing whoever you want.

I figured that if my child had cancer or something I wouldn't rest

till he saw the best specialist that I could find. Same with

(although not life threatening) - if something is wrong with my baby

then I'm going to do all I can till I find someone who I believe

understands what my child is going through. We were blessed to have

found Dr. Punaro in Dallas. She gives speaches at NIH about to

other docs at medical conferences - so I trust her.

Good luck and hang in there and trust your mommy instinct.

Hannah

Aidan - 4 - fevering 26 months

Sid - 5

Fort Worth, TX