Re: Pred. and Aidan

[Guest guest]

hi hannah, my name is rachel and my son is 3 1/2 and was diagnosed with

one month ago. he fevered every 4-8 weeks for almost 2 years befor ID told us

what they thought it was. we were also told to give the prednisone. we tried it

for the first time 2 weeks ago and my sons fever was gone in one hour. i gave

one dose (1 teaspoon) the night that i noticed the fever and the second dose (

another teaspoon) the next morning although the fever had been gone for many

hours. it worked great for him as far as the fever was concerned but here it is

not quite two weeks later and tonight he had another fever. my mother-in-law

was babysitting and called telling me that aaron's temp. was 101. i instructed

her to give the pred. 30 min later she called and said his temp. was 103 and he

was very tired and extremely pale. i told her we would give it another hour and

if his temp. went up or didn't go down we would come home and give motrin. sure

enough it went down and hasn't gone up

since. i plan to give him the second dose in the morning. my son also gets very

pale during an episode and for a couple of days after. i don't plan on keeping

my son on the pred., i really would like to try some of the other treatments

that i have heard of other parents here are using. for now though it works and i

am so relieved when i see my son feeling better so quickly. befor the pred. he

had a fever that got up 106 and stayed around 104 for 8 days. that was his

longest. they usually last for 3-5 days with regular fever reducers. but they

gave him an ulcer and as soon as they wore off his fever was right back. i take

prednisone myself for SLE and i having been praying that he won't have to take

it for long like i have. i hope you find what you're looking for to help you

make the best decison for your son.

God bless and good luck,

rachel, mommie of'

aaron 3 1/2()

alayna 2

ean 5 months

hannahls73 <hannahlsmith@...> wrote:

The Rheum. office told us to give the Pred. again if we thought he

needed it. I really don't like this answer. I hate being the one to

make the call. I took him to the Ped. office today and he tested

neg. for strep and flu - and she told me that if it was her child

she would give the Pred. again even though we only gave it 2 days

ago. The Rheum. office said that if his fever hits 104 to give it.

When we got home from the Ped. he was running 103.9 so I gave it. I

didn't give Motrin or Tylenol or anything because I wanted to see if

the pred. worked.

It's now 3 hours later and it's down to 101. So I guess it's

working. He's really pale though. I noticed that whenever I give the

Pred. he becomes pale - anyone else seen this?

His neck is still swollen - I don't know if the Pred. will take care

of this or not. I guess it's really just a guessing game. I also

told the Ped. that some people wrote on this board about splitting

doses and she said that I could try it. Just to experiment (within

reason) with that Pred. and see what we can do with it.

My question is this - for those of you splitting doses - what is

that like? How much are you giving and when? I know weight and

whatnot plays a role and I'm not real excited about playing doctor -

but I would like to find a way to get a handle on this disease.

Also - I think I really want to get off the pred. and try the

cimeditine - who has had success with this?

Thanks for listening and prayers for all!

Hannah

Aidan - 3 - fevering 20 months

Sid - 5

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

Everyone is raving about the all-new beta.

[Guest guest]

Hi - thanks for your response. Aidan looks to be much better

today. He's still pale - but he can move his neck. I guess the

second dose is what does the trick. How much does your son weigh?

Aidan will be 4 in May - so they are about the same age and Aidan

weighs 30 pounds (feels like he hasn't gained in forever). I was so

surprised that he fevered again so quickly after the first dose of

Pred. - I knew that it might increase cycle frequency - but thought

2 days was out of the question. I guess we'll have to dose him twice

as well.

Isn't is amazing how little is understood about this disorder? I

feel like the doctors are just as up in the air as we are - because

all the children respond differently to medications. I am really

intersted in the Cimdetidine - and am curious about the Singulair as

well. Intersting how it works.

Thanks again for the advice - I appreciate hearing what works for

you! And I hear you about the liking seeing them feel better sooner.

Aidan would fever for days and days with high fevers - that now -

seemingly - can be brought to a halt in a matter of a couple of

hours. What a blessing.

Hannah

Aidan - 3 - fevering 20 months

Sid - 5