Singulair use

[Guest guest]

I just wanted to share with all of you our experience with Singulair. My

son started fevering before his first birthday. In December 2003 he was

prescribed Singulair for his asthma. However, almost exactly one year

after beginning the Singulair he had his first month with NO FEVER. We

had throughout 2004 that he had longer periods between fevers sometimes,

and then December 2004 no fever at all ... we really had no idea there was

a possible connection between him taking the Singulair and how it was

helping his fever syndrome until the NIH spoke of it last year when they

saw him in their study.

I hope I'm not discouraging anyone from trying it, since it took us a year

to see any change in the fevers because all children respond differently

and this is not my intent (to discourage anyone). It was merely a fluke

thing that he was prescribed this medication for a different issue. To be

honest, I don't know that it has ever helped his asthma!

We still have him taking Singulair to this day. At this point, he still

has occasional fevers but his other symptoms have now become more

prevalent for him which is more of a concern now. Plus his fever syndrome

(which currently is labeled as " unknown PFS " ) is progressing and causing

other issues in his bones and tendons.

The NIH and his Rheumatologist feel it best to continue him on the

Singulair. He takes 4 mg. daily and is 7 years old. His Rheumy said that

at some point he may ask us to start giving him 8 mg. to see if it helps

stabilize his immune system better ... but right now he's actually taking

an immunosuppressant to see if it slows the progression of his disease.

More or less they didn't want to do both at the same time because then we

won't know which one is actually helping or not helping so we have to do

it in baby steps ...

So there is our story.

Heidi

Mommy of Mason

[Guest guest]

My daughter has been on Singulair 5mg every day since May 2007. She has

continued to cycle but each cycle has been progressively milder. It is

still to soon to tell because she has had times like this before but it

definitely looks positive right now!! We will wait and see we are due

next week for a cycle.

Christy Mom to 7 y/o

Tonsilectomy 2004 with partial improvement

[Guest guest]

Amy-

Perhaps it could just be her growing out of the fevers altogether, wouldn't

that be great! My daughter just turned 6 and her fevers seem less sever, I am

hoping that she is growing out of it. Does anyone know children who have grown

out of it and at what age? Or is this just a hope that is thrown out to the

families? Sorry to be a downer, it just seems never ending sometimes! My

husband and I would like to plan a trip to Disney in the Spring, but we

hesitate to spend thousands of dollars and then have her be fevering when we

are there.

Amy A

6

[Guest guest]

I want to know the answer to that same question.Is there anybody on our board

here that has out grown this?

A suggestion that I have for the Disney trip, we don't use prednisone because it

makes our episodes closer together and much worse, but as a ten year veteran of

this thing, we do keep it on hand because it does abort the fevers for about a

week and you can definitely use it in " emergencies " (like a trip to Disney)and

just know that after your trip the fever may be back.

Just a thought that might help.

My daughter is 10 started fevering at 3 months.

Mom to Faith 10

[Guest guest]

I would like to hope that my daughter is out growing this but she has

done this several times gets better for a brief period to only have the

symptoms return. It is funny that you mention the Disney thing because

my daughter had been doing fairly well with only minor symptoms and we

went to Disney Jan 2007. We returned and 2 days later she got mouth

ulcers and within 24 hours had the worst cycle in 2 years. Good news

Disney was great!!!!!!

Christy Mom to 7 y/o

(I know the email address says Amy but I go by my middle name and this

is a work account sorry to confuse people!)

[Guest guest]

Everytime we have gone to Disneyland my son has started the trip with 103 or

better. You cant stop living they don't want too. We just got him a wheel

chair for when he would get wiped and he had a great time.

[Guest guest]

I don't paticipate very often but I do read and learn from all of you. Thank you

for that. I am writting in response to Singulair use. I was on this medication,

taking 10mgs a day for approx. 3 years when I began having stomach problems. I

ended up in the hospital for almost a month with excruciating pain. After many

many test I was told the Singulair was the problem and I should consider myself

allergic to it. I haven't taken it since, which is very unfortunate, I think it

really worked. I don't know why this happened, it may have been a fluke, but if

anyone taking this drug suffers from stomach issues you may want to mention it

to the doctor.

The other thing I would like to talk about is aspirin desensitization. I wonder

what kind of reaction people had to aspirin as to know how severe their allergy

was. I had my first asthma attack after taking motrin, that was the beginning of

my problems. At that time was told I was allergic to NSAIDS and or aspirin.

Then I had such a horrible reaction to 1/2 of a aspirin based pain med that was

wrongly given to me at the pharmacy. I was rushed to the hospital in

anaphylactic shock where I remained for two days. I am scared to death to try to

desensitize!! Is this typical? I would appreciate anyones input or experience.

Thanks so much. Peace, Angel