Additional Info. I forgot to include

[Guest guest]

In addition to what I stated below, my little guy is a thumb sucker. He sucks

his thumb when he is tired or hungry. My husband and I noted this last weekend

that he did not suck his thumb while he had the fever. The few times he tried,

he barely put his thumb in his mouth, just the tip and didn't really suck. When

he's well, we play games with him saying, " Get that yucky thing out of your

mouth. " And he will take it out, laugh, and put it back in. Since he was

feeling so bad, we tried it the other way, saying, " Where's your thumb? Don't

you want to suck it? " He just ignored us. Anyone else see the same thing? I

took him in so our dr. could check him (for the millionth time to tell me it was

just ). She noted his throat was a bit red, but it always was and really

didn't see anything in his mouth. I just think that since when you suck, you

also swallow, his mouth or throat, or something hurt to prevent him from sucking

his thumb like he does every day. Any

comments from others?

----- Forwarded Message ----

From: Candace Webb <momluvnit@...>

Sent: Friday, July 6, 2007 5:23:08 AM

Subject: 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.fathersloveletter.com/flltextenglish.html

[Guest guest]

My son is also a thumb sucker, but also does not usually tend to it during his

fevers. We also thought that was unusual, especially for him.

Cimetidine is ideally supposed to make the fevers go away. After we started

our son on the medication, it took over 3 months for the fevers to go away. We

had a 12 weeks of being fever-free, then have had 3 cycles 15 days apart. We

have noticed the fevers being much lower (normally around 101) when on

Cimetidine and they do not last as long (2 days). So for us, even though he has

started fevering again while on the Cimetidine - we really do not want to give

it up due to the positive results we have had. Our son gets tested every 3-4

months to make sure the medicine is not effecting his liver. Other than that, I

am not familar with any other side-effects.

Melody

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