Re: Newcomer looking for help from experienced parents

[Guest guest]

Remember the song a spoon full of sugar. Might help.

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[Guest guest]

Dee - My son Joe was older (almost 4) when we started cimetidine but we did pill

form. Have you tried that? Could maybe tell her it's a vitamin or something -

I don't think the pill form has much flavor if any. Our Joe took it like a

champ (unfortunately after 6 months, it didn't help - sigh). Oh, and you can

get the pill form over the counter w/out a prescription.

Kathleen

Chattanooga, TN

[Guest guest]

Hi

So Sorry to hear about your daughter. When my daughter, about 2 years 8 months

1st tried Cimetidine, she also cried and gagged because it tasted so awful. It

actually smells strong too, we did not have it flavored, I felt so bad for her.

She did get used to it and we had it as part of our dailiy routine, and she did

get used to taking it. I told her she had to do it so it would help her feel

better. I was calm and talked her through it and gave her the meds in a

syringe, from Target (I love their new medicine bottles!). I also had water on

hand to drink right away and gave her a huge hug. Unfortuntately, the

cimeditine did not work on my daughter. We still use Orapred when she gets a

fever and it takes it away almost immediately. I hope this helps. Cimeditine

is awful tasting, but a useful medication. I wish you success with it and hope

your daughter does well.

Lynn

[Guest guest]

Hi Kathleen,

Thanks so much for your response. Hailie is my Grandaughter that

I take care of full-time, so she is like mine. She has been having

fevers for about a year now. I relized it was a problem or something

different when she would have them every month like clockwork and

none of my other kids would get sick. I just took her to the CDC this

last week and they suggested a steriod just before an episode...I

guess it is better then living on motrine? What has been everyones

thoughts on steriods? Thanks, Dee, Westerly, RI

[Guest guest]

Regarding cimetidine, Dani will take absolutely anything - but hated cimetidine.

She wouldn't take it. We did flavor with grape and she doesntm to mind it now.

We always give her juice or milk right after it and she seems fine.

One other trick might be to give something like one or two M & M's afterwards.

Nothing that will ruin meals, but a treat they only get with cimetidine. I've

heard some people use the one M & M thing for potty training, too.

Best of luck. It isn't a miracle cure, but between cutting our prednisone dose

in half and using cimetidine we've gone from 12 day cycles to 35. We are not

sure which is the actual cure, but we felt her prednisone dose was too high for

her. We started at 2mg/kg and are now at .75 mg/kg and it is still stopping the

fever, but she is less aggressive afterwards.

We also notice she has run lots of low grade fevers (99.5) most days since we

started cimetidine, but her immunologist didn't think ot was related. Who

knows?

Best of luck

Ginger, Atlanta, GA

Daughter - le, 27 months ( since 7-12 months)

Son - Jay, 5.5 months.

~Ginger

Systems Solutions Principal, CAR Financial Services

Work: (770) 828-1397

TREO: (404) 915-5035

[Guest guest]

dee,

My son wouldn't take it either until we had it favored with bubble gum and

Equal. It kinda takes the bitterness out! We did a sticker reward system and

his doctor told him it was special medicine that he had to take twice a day.

Conyers loves his doctor and now he reminds us to take Dr. Stone's medicine

every morning and night so we won't forget!

Mom to Conyers (2 1/2 years, fevering since May 06)

Maddie ( 2 1/2 year, no fevers)

[Guest guest]

Kathleen,

I appreciate your response and thank you for the suggestion! I had no

idea that it came in pill form and I will look for it to give it a

try. I suppose I will need to talk to the dr to see what the dosage is

for an OTC pill form.

I'm sorry to hear the cimetidine did not work for your son. What

options are you trying now?

Thank you!

Dee

[Guest guest]

,

Wow - that is wonderful to hear your son is actually reminding you to

take is medicine! I will keep the bubble gum and Equal in mind for

next time. (We opted for Cherry which was clearly not the right fit to

hide the taste of this!)

So has the Cimetidine made a difference for your son? How long was he

on it before you noticed a change in his patterns?

I appreciate you taking the time to respond!

Dee

Mom to , 2 1/2, fevering since 6 weeks

[Guest guest]

,

As a newcomer, it is so good for me to hear everyone else's

experience. It's so interesting how different every case is but it

is also so reassuring to see all these parents echo the feelings we

have been having and know I'm not crazy or making things up.

We just recently switched from our pediatrician to a rheumatologist

and have only visited their office twice. It might seem silly to say

this, but when I saw the rheumatlogist, I almost felt like they

weren't taking us seriously or weren't giving us the attention I felt

we deserved. I saw other children in the office who were definitely

more visibly sick than with more life-impairing/threatening

illnesses. It made me feel like the nurses and doctors were

thinking, " Why is this crazy woman rushing in here when all her kid

has is a fever? " Everything I've read on this site and all the

frustrations justify my feelings and actions. I'm just so glad I

found this! I really need this support because everyone is right -

no one understands how much can affect your life.

Every day, I'm grateful that it's this and not cancer or something

equally as frightening, but at the same time this is still scary and

tough to deal with.

Anyway, I appreciate you sharing your experience with Conyers. Good

luck - I hope you get a pass on the next scheduled fever!

Dee

Mom to , 2 1/2, fevering since 6 weeks

Cincinnati, OH