ph and Singulair

[Guest guest]

Hey Amy

NIH is where Singulair was started as a research drug for Periodic

Fevers. (Along with doctors that participate in the research outside

of NIH but they follow NIH guidelines) It has been prescribed for at

least 2 years that I know of... (since they offered it to us a

couple years ago but I had declined since ph was doing better

back then and because he was going through more testing for NOMID I

know they have been researching since at least then) I will ask Bev

how long and see if she has more specifics.

They prescribe it for all the PFSs. TRAPS, HIDs, , FMF and for

Muckle Wells. They do not have any data regarding the statistics but

I was told it works in some! <smile> We already know that from our

own unscientific discussions here!

I guess in a couple years they will have better information

regarding results.

ph is starting at 8 mg for a month and we are increasing him to

10 mg. (he weighs about 60 pounds and is 8 yrs old) I checked the site for

singulair and when given either for

asthma or allergies it is recommended to give 5 mg. I called Beverly

to ask why so high in ph and she said they recommend the higher

dose (like Cimetidine!!) for the Periodic Fever Disorders. So we

will try it... up him to the 10mg... and see how it goes over the

next half year (at least)

Since he fevered so often this summer and the rashes and hives seem

worse, we may have to go back sooner than next March. Just depends.

God Bless

Fran

Fran Bulone RN

Mom to ph 8yr CIAS1 mutation 11/05; Dyspraxia 11/06; Dyslexia 12/06

Waxhaw NC

/

http://www.caringbridge.org/visit/josephbulone

[Guest guest]

Fran,

Last weekend we thought my daughter, Celine had the croup,

especially since my older daughter just go over it. We even had her

to the ER where they gave her a steroid shot. I brought her to her

pediatrician the next day to see if he thought she had the croup or

just her . He thought she got both. She did have the mouth

ulcers which are common for her. I wondered if any of the other kids

with sounded " croupy " . Perhaps next time I won't be as

alarmed. Celine has not had any form of treatment yet. Her

diagnosis was just a month ago. I am journaling the fevers now and

we will decide a course of action. I am leaning toward the Tagament

(cemitidine?) The steroid seems like too many side effects. Her

fevers usually run about 103 and last 3 days. Last time frame

between was 20 days, but then she had the steroid shot in the ER...

so now I expect it to come sooner.

I like what I've heard about the Singular.

I hope others who've tried it post their thoughts.

Thanks,

mommy to Celine 2 1/2 fevering since June 07

[Guest guest]

Hi ,

My son Josh, 3, just got over a weird episode with a

croup like cough as well. I will start with a brief

history. Josh was diagnosed with in September

after fevering every 14 days with temps over 104. The

fever episodes would last for 4-5 days and he would

have knee pain, stomach pain, swollen lymph nodes and

a red throat. All his strep cultures were negative.

The Infectious Disease department at Vanderbilt

Children's diagnosed him with . Josh has been on

Singulair, thanks to this message board, for a little

over a month. His fevers still come every 14 days but

they are not near as high, last episode was 101.7 at

its peak! And the fevers are only lasting 3 days

now!! He started his last episode on time and fevered

for 3 days. Then it seems as if he got a cold with a

croup like cough. I thought he might have the croup

as he had no runny nose but sounded congested with

that seal bark. His fever shot up to over 104 again

for 2 days. My husband and I don't know if this was

part of his episode and it was longer or if

coincidentally he got something else or both.

Good luck with whatever treatment you try for Celine.

This board has been a source of wonderful information

for me. I will write back if Josh has another croupy

episode with fever.

Jen