Re: New here and have a few questions

[Guest guest]

Good info & site

~S

> beet juice

> lecithin

> milk thistle

> raw veggie juices

>

> Here is just one of the zillions of sites for you

>

>

http://www.kitchendoctor.com/healthconditions/gallstones/gallbladder.

html

[Guest guest]

Hi, Candace,

My name is Jen, and I am new to the group also. Our

2 1/2 yr old has probably had for a year, but we

just got a diagnosis.

We have not tried cimetidine (Tagamet), and I do know

there are possibly side effects and drug interactions,

especially in children. Used with caution, I think

you would be fine, although I do believe you have to

watch out for liver function problems, which can be

done by simple blood tests.

We have gone through 3 rounds of prednisone so far.

As far as our son Eli is concerned, prednisone has

been a miracle drug. On our first try, Eli's fever

disappeared in an hour, and he was close to his normal

self, except very very hungry. We had used a 2mg/kg

dose (10 ml for a 15 kg boy). He was a little

grouchier and hyper than normal. His fever returned

on day three (he would normally still have a fever at

that point), so we gave him a half dose.

On our second try of Prednisone, I gave him 1.5mg/kg

(7.5 ml). He know longer had the over-eating side

effects, and he definitely acted not quite like

himself, as if he still felt a bit under the weather,

but it was a welcome trade off to temps up to 105, no

sleep, and drinking so little we had to worry about

dehydration. I did give him half that dose the next

day, trying to prevent a fever breakthrough. The

fever did not return during that episode.

Then, yesterday, Eli's fever began again, and I have

tried 1mg/kg of Pred., the smallest dose yet. It

still completely took the fever away, and Eli is still

a little on the short-fused, not feeling his best

side. We are just happy that he does not look so

ill. I am not giving a second dose this time unless

his fever breaks through again.

Before Prednisone, Eli's fevers would come about every

21 days, last for 3 days, and were followed by several

days of malaise. Now they are coming every 15 days,

and with prednisone, I don't think any outside

observer would even know he's having an episode. I

do worry about so much prednisone, and I am curious if

we should ask our doctor to try cimetidine.

We are really on our own with this, as Eli has never

been sick enough to be hospitalized, so he is not

treated like he has anything too serious. No one in

this town has treated that I know of, and our

doctor is giving me the reigns on prednisone

treatment, as I am a nurse. That is a little scary

though, so I am finding this group so helpful to see

what everyone else is doing!

I did worry about all that Ibuprofen and Tylenol we

were giving before. Not only was it a ton of

medication, but Eli HATED it, and often we had to

force it down, which would sometimes cause him to

throw it back up.

We use the non-fridged prednisone, which the doc

mentioned tasted badly, but Eli seems to know it makes

him feel better. In fact, even though he is only 2

1/2 yrs old, when this last fever started, he said

" Need my medecine, Mommy " , which he sure did.

I have to say prednisone treatment has made us feel

like we have our little boy back.

You have so much on your plate, it sounds like you

could easily apply for the Mom of the Decade award.

I hope the road gets easier as you travel down it.

Jen

--- Candace Webb <momluvnit@...> wrote:

> 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

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

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[Guest guest]

>Candace,

My son has been on Cimetidine for 6 months. We too have seen

a change in his cycle. His fevers are mostly 3 days instead of 4 and

the fevers usually only go to 102. I say usually because in the 6

months he has had 2 bad cylces one being last month. He is due for a

cycle today. Our doctor said to keep him on it for three more months

and then we will stop because he doesn't believe it is going to stop

the fevers for him. We asked about taking his tonsils out but he

said it was too early for us to wait. Our son has been fevering 15

months. We don't use Prednisone but my son is going into the 1st

grade and we may consider using it during the school year.

Hope this helps.

Kim Ingalls

Fredericksburg, Va

> 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

>

>