Singulair

[Guest guest]

My comment about the Singulair wasn't meant to say that doctors couldn't

prescribe it off-label. My doctor already is since my asthma is under control

without Singulair, but anyway with Samters it doesn't have to be off-label since

we all have asthma.

What I was trying to say was that I think I need a higher dose to really help

with the sinus stuff and I am hoping they will get an indication with a higher

dose, and I have information that I can't really discuss here that leads me to

believe they are going to try to get an indication for Singulair with nasal

allergies.

I would love to get Zyflo but it's not on my insurance company's formulary,

which means I would have to pay not $20 (what Singulair is for me) or $50 (what

Accolate is) but whatever the true cost is, which I'm sure is a heck of a lot

more than 50 bucks, so I haven't even asked my doctor about it.

, as far as the aspirin desensitization, what are your reasons for

having it done? It sounds like you are pretty well under control. Or is your

asthma still bad? Just wondering because I've been desensitized twice and it's

not without a lot of risks, not just during the process but for the rest of the

time you take aspirin. I think it's really helped me but it's a pretty extreme

measure to take unless your symptoms are not controllable, which mine weren't at

the time.

Actually I am considering at some point in the future going off of the aspirin

to see how I do on just Singulair (at a higher dose hopefully) and Advair. I

want to have kids someday and I can't be on aspirin during pregnancy, and I know

there are long term GI side effects possible with the aspirin. I am careful

about it but it's still always a possibility.

And just FYI, I'm glad the aspirin desense helped other people's allergies but

to be honest since I've been on the aspirin my asthma has been dramatically

better but my other allergies have been WORSE. I never got hives before and I

get them every summer now, and my nasal allergies have really not been better

either. I don't know if it's related to the aspirin but in my case the aspirin

hasn't been an allergy cure.

Take care, all

Lori

[Guest guest]

Doctors can prescribe medications for uses other than what the FDA has

approved for label. Word of mouth and talk between doctors slowly

spreads the information. Drug companies and their sales reps are

tightly restricted from discussing anything other than what is printed

on the label. Samters sufferers should just talk to their doctors about

Singulair and try to pass on referrals from other doctors.

Cheers,

Wallace

Singulair

Hey all -- thanks for the updates. For some reason I don't get all

the emails so I'll have to try to remember to check the forum every

once in a while.

I just wanted to update you all on how it's going for me with

Singulair. For any of you, especially the more severe, that haven't

tried Singulair I highly highly recommend it. It is the only thing I

have seen except for surgery or oral steroids in the past 10 years

that has had any effect on my sinuses at all. I am pretty sure that

the company that makes this is going to come out with an indication

for it soon, too, so that doctors can actually prescribe it on label

for sinus allergies, but for those of us with Samters it's really an

ideal medication. I bet they are going to find out with higher doses

that it can help those of us with more severe " disease " more, too,

and I'm going to ask my doctor if he can increase my dosage.

Glad to hear the aspirin desensitization is working for others of us.

Lori

[Guest guest]

I actually just switched from Singulair to Accolate, and the results for me

have been dramatic. I had some kind of nonspecific allergy-related hives

begin to appear at the beginning of pollen season here (a month ago or so),

and a LONG chain of continuous sinus infections. Now, they are completely

gone, and my allergy symptoms have been minimal, which for me is amazing. I

also made other changes, like changing the salt/glycerin saline lavage, but

the Accolate is the largest change.

My doctor says that some people respond to Accolate more strongly ( I

wonder if it's because it's a 2xday drug instead of the one).

He also said that there's a leukotrine inhibitor called Zyflo that works

even better then Accolate and Singulair, since it interferes with

leukotrines even earlier in the process. Don't know much about it though. I

think I heard of it awhile ago, but it required kind of an extensive liver

workup, which made me nervous.

I'm also making arrangements to do the aspirin desensitization thing at La

Jolla. It would be great if it helped curb my allergies as well.

stephanie holinka

Singulair

Hey all -- thanks for the updates. For some reason I don't get all

the emails so I'll have to try to remember to check the forum every

once in a while.

I just wanted to update you all on how it's going for me with

Singulair. For any of you, especially the more severe, that haven't

tried Singulair I highly highly recommend it. It is the only thing I

have seen except for surgery or oral steroids in the past 10 years

that has had any effect on my sinuses at all. I am pretty sure that

the company that makes this is going to come out with an indication

for it soon, too, so that doctors can actually prescribe it on label

for sinus allergies, but for those of us with Samters it's really an

ideal medication. I bet they are going to find out with higher doses

that it can help those of us with more severe " disease " more, too,

and I'm going to ask my doctor if he can increase my dosage.

Glad to hear the aspirin desensitization is working for others of us.

Lori

[Guest guest]

My reason for trying the aspirin desensitization has been the nasal polyp

issue. I just had surgery in August, and my doctor (who has sent a few

people through the program at Scripps) has said that it does seem to work

to control polyp development, and the best time to start it is when you're

clear and symptom-free, as I am now for the first time in a long time. In

my case, the polyp problem has been so severe that things have been

discussed like filling the frontal (that's the forehead one, right) with

cement to permanently close it off.

I know aspirin has long-term effects, but to be honest, I'm willing to bet

that things like Singulair and Accolate will have long-term effects too.

I'm looking for a really long-term solution, since nothing seems to offer

me that, at this point.

I'm going to stay on allergy injections, accolate, and all the other meds.

Basically, I'll take anything that will give me a shot at never having

another surgery.

s

RE: Singulair

My comment about the Singulair wasn't meant to say that doctors couldn't

prescribe it off-label. My doctor already is since my asthma is under

control without Singulair, but anyway with Samters it doesn't have to be

off-label since we all have asthma.

What I was trying to say was that I think I need a higher dose to really

help with the sinus stuff and I am hoping they will get an indication with

a higher dose, and I have information that I can't really discuss here that

leads me to believe they are going to try to get an indication for

Singulair with nasal allergies.

I would love to get Zyflo but it's not on my insurance company's formulary,

which means I would have to pay not $20 (what Singulair is for me) or $50

(what Accolate is) but whatever the true cost is, which I'm sure is a heck

of a lot more than 50 bucks, so I haven't even asked my doctor about it.

, as far as the aspirin desensitization, what are your reasons for

having it done? It sounds like you are pretty well under control. Or is

your asthma still bad? Just wondering because I've been desensitized twice

and it's not without a lot of risks, not just during the process but for

the rest of the time you take aspirin. I think it's really helped me but

it's a pretty extreme measure to take unless your symptoms are not

controllable, which mine weren't at the time.

Actually I am considering at some point in the future going off of the

aspirin to see how I do on just Singulair (at a higher dose hopefully) and

Advair. I want to have kids someday and I can't be on aspirin during

pregnancy, and I know there are long term GI side effects possible with the

aspirin. I am careful about it but it's still always a possibility.

And just FYI, I'm glad the aspirin desense helped other people's allergies

but to be honest since I've been on the aspirin my asthma has been

dramatically better but my other allergies have been WORSE. I never got

hives before and I get them every summer now, and my nasal allergies have

really not been better either. I don't know if it's related to the aspirin

but in my case the aspirin hasn't been an allergy cure.

Take care, all

Lori

[Guest guest]

Well, your blood is thinned out, so you can't have major surgery while you're on

the aspirin and if you're in a serious accident you could bleed to death. Not

to be dramatic but it definitely thins your blood out a lot at the high doses

you need to take every day for symptom improvement. To remain desensitized it's

probably a little bit less that you need to take but it doesn't help the

symptoms at all.

Hope this helps,

Lori

[Guest guest]

I honestly hope the aspirin helps you with the nasal polyps! It didn't really

help me at all with them, as I've had the surgery three times, about every three

to four years and I'm at that point again where they're saying I've got to have

it. I've been desensitized to aspirin twice, less than three years apart.

This is NOT to say that it can't help but just that it doesn't help with

everybody. And finally something is working, Singulair, for my nasal symptoms

as nothing else ever has. I just think we with Samters all need to be on higher

doses of the leukotriene modifiers/antagonists.

let us know how the aspirin desensitization goes, !!

Lori

[Guest guest]

Other than in pregnancy, and maybe stomach problems, what are the possible

dangers with taking aspirin all the time? I have not gone through the

program yet, and am interested in learning what the possible downside is

before I decide.

Thanks,

Kim

At 03:21 PM 3/21/2002 -0500, you wrote:

>My comment about the Singulair wasn't meant to say that doctors couldn't

>prescribe it off-label. My doctor already is since my asthma is under

>control without Singulair, but anyway with Samters it doesn't have to be

>off-label since we all have asthma.

>

>What I was trying to say was that I think I need a higher dose to really

>help with the sinus stuff and I am hoping they will get an indication with

>a higher dose, and I have information that I can't really discuss here

>that leads me to believe they are going to try to get an indication for

>Singulair with nasal allergies.

>

>I would love to get Zyflo but it's not on my insurance company's

>formulary, which means I would have to pay not $20 (what Singulair is for

>me) or $50 (what Accolate is) but whatever the true cost is, which I'm

>sure is a heck of a lot more than 50 bucks, so I haven't even asked my

>doctor about it.

>

>, as far as the aspirin desensitization, what are your reasons

>for having it done? It sounds like you are pretty well under control. Or

>is your asthma still bad? Just wondering because I've been desensitized

>twice and it's not without a lot of risks, not just during the process but

>for the rest of the time you take aspirin. I think it's really helped me

>but it's a pretty extreme measure to take unless your symptoms are not

>controllable, which mine weren't at the time.

>

>Actually I am considering at some point in the future going off of the

>aspirin to see how I do on just Singulair (at a higher dose hopefully) and

>Advair. I want to have kids someday and I can't be on aspirin during

>pregnancy, and I know there are long term GI side effects possible with

>the aspirin. I am careful about it but it's still always a possibility.

>

>And just FYI, I'm glad the aspirin desense helped other people's allergies

>but to be honest since I've been on the aspirin my asthma has been

>dramatically better but my other allergies have been WORSE. I never got

>hives before and I get them every summer now, and my nasal allergies have

>really not been better either. I don't know if it's related to the

>aspirin but in my case the aspirin hasn't been an allergy cure.

>

>Take care, all

>

>Lori

>

>

>

[Guest guest]

Thank you

MY doc is going to put me on it as well.I have a very

controled case of Samters. Will see how this works.

Dan in La.

--- truelori <truelori@...> wrote:

> Hey all -- thanks for the updates. For some reason

> I don't get all

> the emails so I'll have to try to remember to check

> the forum every

> once in a while.

>

> I just wanted to update you all on how it's going

> for me with

> Singulair. For any of you, especially the more

> severe, that haven't

> tried Singulair I highly highly recommend it. It is

> the only thing I

> have seen except for surgery or oral steroids in the

> past 10 years

> that has had any effect on my sinuses at all. I am

> pretty sure that

> the company that makes this is going to come out

> with an indication

> for it soon, too, so that doctors can actually

> prescribe it on label

> for sinus allergies, but for those of us with

> Samters it's really an

> ideal medication. I bet they are going to find out

> with higher doses

> that it can help those of us with more severe

> " disease " more, too,

> and I'm going to ask my doctor if he can increase my

> dosage.

>

> Glad to hear the aspirin desensitization is working

> for others of us.

>

> Lori

>

>

__________________________________________________

[Guest guest]

Hello All,

Has anyone suffered increased headaches when taking Singulair?

I had it prescribed last month and after taking it for two weeks,

have taken a two-week break,

as there was no perceptible improvement and my well-being had

diminished.

Fellow Sampter Sufferers will recognise, that I swing from one

extreme of ill health to another on a daily basis, so my experience

was not concusive.

I will re-start and give it another try, but in the meantime, has

anyone had side effects with Singulair, and has changing to Accolate

improved the situation?

Regards

.

> Hey all -- thanks for the updates. For some reason I don't get all

> the emails so I'll have to try to remember to check the forum every

> once in a while.

>

> I just wanted to update you all on how it's going for me with

> Singulair. For any of you, especially the more severe, that

haven't

> tried Singulair I highly highly recommend it. It is the only thing

I

> have seen except for surgery or oral steroids in the past 10 years

> that has had any effect on my sinuses at all. I am pretty sure

that

> the company that makes this is going to come out with an indication

> for it soon, too, so that doctors can actually prescribe it on

label

> for sinus allergies, but for those of us with Samters it's really

an

> ideal medication. I bet they are going to find out with higher

doses

> that it can help those of us with more severe " disease " more, too,

> and I'm going to ask my doctor if he can increase my dosage.

>

> Glad to hear the aspirin desensitization is working for others of

us.

>

> Lori

[Guest guest]

is on Singulair and we have had no problems with it. His mom, also,

is on it for her asthma too. If you think it is the pink coloring why don't

you try washing the color off just before you give it to him and see if that

is enough. It really is a big help. rarely has to use his inhalers

anymore since starting the singulair.

Betty

grandma and guardian to

- 11 yo-- Bipolar/ADHD on Depakote, Adderall

Evan - nonverbal autism on 3 mg Risperdal

- 6 - Bipolar/ADHD/RAD/PTSD on Depakote, Adderall

mother to , their mom - Bipolar/ADHD on Topamax

wife to Bob too many meds to remember

[Guest guest]

I dont know if the singulair affected him or not... But we stopped

just in case... I hope it doesnt.... He started wheezing which he

never does... He only had asthma attacks when he was already sick, he

isnt sick, and started wheezing... So we need to go back on the

singulair on a regualr basis at least during this cold and flu

season, I guess... darn... I had hoped he was " outgrowing it "

because he had even had a few colds without wheezing this year.

Looks like it doesnt want to go away afterall....

Thanks

> is on Singulair and we have had no problems with it. His

mom, also,

> is on it for her asthma too. If you think it is the pink coloring

why don't

> you try washing the color off just before you give it to him and

see if that

> is enough. It really is a big help. rarely has to use his

inhalers

> anymore since starting the singulair.

> Betty

> grandma and guardian to

> - 11 yo-- Bipolar/ADHD on Depakote, Adderall

> Evan - nonverbal autism on 3 mg Risperdal

> - 6 - Bipolar/ADHD/RAD/PTSD on Depakote, Adderall

> mother to , their mom - Bipolar/ADHD on Topamax

> wife to Bob too many meds to remember

[Guest guest]

My son was on Risperadal and Luvox from the beginning of the year until the

beginning of August. At that time we saw Dr. Joynouchi at UMDNJ and she is

doing autoimmune testing in autistic kids. For us to participate in the

testing, my son had to be off the " mind " meds. In place of the above, Dr. J.

put my son on Singulair and so far he has been doing well. At a recent

therapist session, our OT said my son did great and seemed to have an inner calm

about him. He suffers from allergies and the Singulair is supposed to be good

for allergies, as well as asthma.

Another theory is that autoimmune issues can create chronic inflammation, which

can create " autistic " characteristics. Singulair supposedly also helps with

inflammation. We don't know whether that's the case with my son, but we're

hoping we can get some additional answers with additional testing.

At any rate, my son is on Singulair instead of Rispersdal, and behaviors have

been really pretty good.

Joanne

Singulair

I was wondering if anyone had their child on singulair and it caused

problems? I had taken my son off his when he was starting his

terrible behavior, because I was afraid it was causing or worsening

it. It is a pink pill so I wondered about the coloring causing

problems etc... He has started wheezing and needs to get back on

it... I figured only you guys would know right off hand if it made

things worse...

Thanks

[Guest guest]

Joanne, bless your heart... I was wondering if it would have that

effect... I was told to give it to him at night because it makes them

drowsy.... (singulair that is) I did give it to him in the morning a

few times when I forgot and he was extremely calm and quiet, which

alarmed everyone at his mothers day out! hahahhaha they thought he

was sick, because he is very hyper.... I dont want him drugged up,

but I think if he has to take the singulair it might be better than

the risperdal. We dont have a problem with him going to sleep, he

does have a few screams at night and sometimes he is restless, but

never anything that bothers him or us... I might go back on the

singulair and wait and see... I am almost anti medicine... so when

his behavior got bad to begin with I stopped everything to make sure

that it wasnt one of those causing problems..it wasnt.... I do know

his nebulizer treatments were awful... he had tremors, and was very

jittery and irritable... and me just breathing it being near him it

made me feel funny...but luckily he rarely had episodes, but the

doctor had him on those 3 times a dayfor months...

We moved over the weekend and it has really thrown him for a loop...

no tantrums over anything specific in regards to the move... but just

the whole thing has made him have more fits made him grouchy and

today he had bitten everyone, threw and broke things at the

therapists. Its just not been fun at all... I have 2 napping right

now... I am in heaven.... lol

better go get them up or we'll have more problems later on...

> My son was on Risperadal and Luvox from the beginning of the year

until the beginning of August. At that time we saw Dr. Joynouchi at

UMDNJ and she is doing autoimmune testing in autistic kids. For us

to participate in the testing, my son had to be off the " mind " meds.

In place of the above, Dr. J. put my son on Singulair and so far he

has been doing well. At a recent therapist session, our OT said my

son did great and seemed to have an inner calm about him. He suffers

from allergies and the Singulair is supposed to be good for

allergies, as well as asthma.

>

> Another theory is that autoimmune issues can create chronic

inflammation, which can create " autistic " characteristics. Singulair

supposedly also helps with inflammation. We don't know whether

that's the case with my son, but we're hoping we can get some

additional answers with additional testing.

>

> At any rate, my son is on Singulair instead of Rispersdal, and

behaviors have been really pretty good.

>

> Joanne

>

>

>

> Singulair

>

> I was wondering if anyone had their child on singulair and it

caused

> problems? I had taken my son off his when he was starting his

> terrible behavior, because I was afraid it was causing or

worsening

> it. It is a pink pill so I wondered about the coloring causing

> problems etc... He has started wheezing and needs to get back on

> it... I figured only you guys would know right off hand if it

made

> things worse...

> Thanks

>

>

>

>

>

[Guest guest]

I also keep hoping that will outgrow the asthma but I am not counting

on it. We are starting NAET treatments tomorrow for 5 in the family. I

have heard so much good about it on the gfcfkids list and other lists, then

a friend on a RAD list got wonderful results for her family with it. One of

her grandchildren was on a very restricted diet and now is off it. I am

hoping that by doing the allergy elimination that a lot of problems we have

all been having will be eliminated. I am also hoping that and

's asthma will be eliminated. Of course, it can take some months to

get through all the treatments if we have lots of allergies--and we do.

Betty

grandma and guardian to

- 11 yo-- Bipolar/ADHD on Depakote, Adderall

Evan - nonverbal autism on 3 mg Risperdal

- 6 - Bipolar/ADHD/RAD/PTSD on Depakote, Adderall

mother to , their mom - Bipolar/ADHD on Topamax

wife to Bob too many meds to remember

[Guest guest]

Evan is on the Risperdal and on Claritin-Redi tabs for allergies. I would

much rather he take Singulair than Risperdal if it would help his behaviors.

I really do not like him taking the Risperdal although with his brothers

being bipolar it probably will be something that he has to stay on.

Betty

grandma and guardian to

- 11 yo-- Bipolar/ADHD on Depakote, Adderall

Evan - nonverbal autism on 3 mg Risperdal

- 6 - Bipolar/ADHD/RAD/PTSD on Depakote, Adderall

mother to , their mom - Bipolar/ADHD on Topamax

wife to Bob too many meds to remember

----- Original Message -----

From: <DreamTapper@...>

> My son was on Risperadal and Luvox from the beginning of the year until

the beginning of August. At that time we saw Dr. Joynouchi at UMDNJ and she

is doing autoimmune testing in autistic kids. For us to participate in the

testing, my son had to be off the " mind " meds. In place of the above, Dr.

J. put my son on Singulair and so far he has been doing well. At a recent

therapist session, our OT said my son did great and seemed to have an inner

calm about him. He suffers from allergies and the Singulair is supposed to

be good for allergies, as well as asthma.

>

> Another theory is that autoimmune issues can create chronic inflammation,

which can create " autistic " characteristics. Singulair supposedly also

helps with inflammation. We don't know whether that's the case with my son,

but we're hoping we can get some additional answers with additional testing.

>

> At any rate, my son is on Singulair instead of Rispersdal, and behaviors

have been really pretty good.

>

> Joanne

[Guest guest]

I have been told by several professionals that Singulair is a very benign med.

I would also much rather have my son on Singulair than some of the other meds.

Joanne

Re: Singulair

Joanne, bless your heart... I was wondering if it would have that

effect... I was told to give it to him at night because it makes them

drowsy.... (singulair that is) I did give it to him in the morning a

few times when I forgot and he was extremely calm and quiet, which

alarmed everyone at his mothers day out! hahahhaha they thought he

was sick, because he is very hyper.... I dont want him drugged up,

but I think if he has to take the singulair it might be better than

the risperdal. We dont have a problem with him going to sleep, he

does have a few screams at night and sometimes he is restless, but

never anything that bothers him or us... I might go back on the

singulair and wait and see... I am almost anti medicine... so when

his behavior got bad to begin with I stopped everything to make sure

that it wasnt one of those causing problems..it wasnt.... I do know

his nebulizer treatments were awful... he had tremors, and was very

jittery and irritable... and me just breathing it being near him it

made me feel funny...but luckily he rarely had episodes, but the

doctor had him on those 3 times a dayfor months...

We moved over the weekend and it has really thrown him for a loop...

no tantrums over anything specific in regards to the move... but just

the whole thing has made him have more fits made him grouchy and

today he had bitten everyone, threw and broke things at the

therapists. Its just not been fun at all... I have 2 napping right

now... I am in heaven.... lol

better go get them up or we'll have more problems later on...

Get more from the Web. FREE MSN Explorer download :

http://explorer.msn.com

[Guest guest]

Yes, it was me. There is no literature on it being more effective

that I'm aware of, it's all anecdotal, but if he wants to look in the

PDR it was tested on mild to moderate asthma. NOT severe asthma, NOT

nasal polyps and DECIDEDLY NOT SAMTERS.

However, its SAFETY was studied in higher doses, and that can be

found in the PDR. Therefore I say why not take it at a higher dose.

I don't know anything about liver functions on higher doses and I

would like to know where he got that information. Can you ask him?

I didn't see anything about that in the PDR, but maybe I missed it.

The other thing is you can ask him to write the manufacturer of

Singulair and request any information on off-label usage such as

higher doses, nasal polyps, etc. They will send him information.

THey can't advertise it because it's not approved by the FDA, but

when a doctor requests such information (he can also ask the drug rep

from the company if he has one that comes in to his office) they will

provide it. I don't think they can give it to patients, but if your

doc is willing to try, he can find some more info out about it.

Hope this helps!

Lori

[Guest guest]

I believe Singulair can be helpful for the polyps but I do not think

it is because of an effect on allergies necessarily.

Ask your doctor to ask the pharmaceutical representative from the

company who makes Singulair (I think it's Merck off the top of my

head but I'm not sure) for information about Singulair in treating

nasal polyps. THey will provide him with the information that they

have and I think you will find it interesting. They by law cannot

provide this unless a physician asks, because they do not have an FDA

indication/labeling for nasal polyps. BUt when a doctor asks they

are allowed to provide what's called off-label information about it.

I take the Singulair only for my polyps (my asthma is controlled on

Advair) and when my nasal symptoms are worse I take more, up to 30

milligrams a day.

Lori

[Guest guest]

Singulair is being used at the NIH with Periodic Fever disorders. I believe

this has been in practice for the past year so it is a newer treatment!! We

were offered to try this method at our visit in March, but I opted not too

since thankfully ph's fevers finally are controlled with Motrin and

Tylenol!

It is suppose to be a MUCH safer method than using the steroids. If I needed

more assistance or if ph were younger and the fevers so much more

difficult to control I would have definitely tried Singulair!!

Let us know how it works.

Fran

Fran A Bulone

Mom to ph 7 yrs old

Waxhaw, NC

Owner & Moderator Group

<>

[Guest guest]

Hi Lori,

My 3 yr. old daughter is currently on Orapred. Can

you give me an idea of your daughter's dosage (how

much, how often and how old she is, how much she

weighs) so that I can bring up this option at my

daughter's next doc. apt. week after next? Also,

anyone else who is currently using Singulair - I'd

love to hear from you, too. It helps to be fully

educated since my ped. will probably not have heard of

this treatment for .

Thanks to all,

- mother to , 5, and Audrey, 3 ()

--- slsjasrodgers@... wrote:

> Hello all

> My daughter's rheumatologist has just switched her

> from cimetidine to singulair. Just curious if anyone

> has had any experiences with it - good or bad.

> Thanks

> Lori

> Mom to 21 months

>

>

__________________________________________________

[Guest guest]

> Hi

I am glad to help. The prescription for my daughter is for Singulair 4 MG tablet

chewables and the dosage is for 1/2 a tablet once a day. I will write back with

any news from it. I hope this helps you with some options.

Lori

Mom to 22 months

> From: Henry <heatherp_87@...>

> Date: 2006/06/22 Thu PM 04:37:53 EDT

>

> Subject: Re: singulair

>

> Hi Lori,

>

> My 3 yr. old daughter is currently on Orapred. Can

> you give me an idea of your daughter's dosage (how

> much, how often and how old she is, how much she

> weighs) so that I can bring up this option at my

> daughter's next doc. apt. week after next? Also,

> anyone else who is currently using Singulair - I'd

> love to hear from you, too. It helps to be fully

> educated since my ped. will probably not have heard of

> this treatment for .

>

> Thanks to all,

>

> - mother to , 5, and Audrey, 3 ()

> --- slsjasrodgers@... wrote:

>

> > Hello all

> > My daughter's rheumatologist has just switched her

> > from cimetidine to singulair. Just curious if anyone

> > has had any experiences with it - good or bad.

> > Thanks

> > Lori

> > Mom to 21 months

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Lori,

I was just wondering how long your daughter was on cimetidine? Was the

cimetidine doing anything for her? We had our 29 mo. Old son on it now for

4 months and all it has done is effect the severity of the fevers.they are

now up 104.5 instead of 105.9. It has not changed the frequency or duration

so we are considering prednisone. If there is another alternative though I

would certainly like to look at that first. I'm wondering if your

Rheumatologist said anything about Singulair working on when

Cimetidine did not. Sorry about all of the questions, but was looking for

some more insight. To date the only options we have been given for Liam is

Cimetidine and Prednisone (If he has ).

Unfortunately Liam's coarse of is a little unusual so they are

hesitant now to confirm the diagnosis and we will be trying to get the

genetic testing done, but they are saying that even if we do the genetic

testing that about 50% will come back negative because they just have not

mapped all the mutations yet for the different genetic disorders and then we

would try to get a clinical diagnosis by trying different medications to see

if any work..the general plan was to try prednisone next and if that didn't

work possibly cochicine and I was just wondering where Singulair would fit

in to that plan..

If any one has any insight/experience with this I would greatly appreciate

it.

Thank you,

Tara

Mom to Liam (29 mo. ? And Owen 6 yrs)

Phila Area, PA

singulair

Hello all

My daughter's rheumatologist has just switched her from cimetidine to

singulair. Just curious if anyone has had any experiences with it - good or

bad. Thanks

Lori

Mom to 21 months

[Guest guest]

> Tara,

Our situations with our children sound very familiar. We had about 3 months on

cimetidine with the same effect as your son had, just lower " high " temps but no

change in frequency or duration really (maybe 24 hours at best shorter). Sam

ended up getting diarrhea and when I called the rheumatologist to check on if he

thought it was a side effect from cimetidine he said it was unusual but felt our

benefits weren't there with cimetidine and then this is the drug with the next

least of secondary side effects. (He doens't care for the side effects of

steroids) So here we are. I am just starting it today (I didn't want to start it

right away because I have my other daughter who had her tonsils out today and a

mom can only handle so much!!!) Plus she is still in a cycle and I wanted to

wait until it went away so I could tell if there were any side effects for the

singulair. We will also have our daughter go through genetic testing in August.

I just talked to the ENT today and told him I felt like I should have had him do

a two for one deal on the tonsils (my other daughter is NOT but recurrent

strep) and he said he feels that tonsils should be taken out all the time with

these kids! He told me to take her in! Well, we will see on that. For now we

will try the singulair and see.

We are in the Lancaster County PA area, Tara. Not too far away. My hubby works

in Philly, just thought I would share that similarity as well.

Good luck and I will keep the group posted on how Sam does with the Singulair. I

wish us all fever free days!

Lori

Mom to 22 months

> From: " Tara " <taracevans@...>

> Date: 2006/06/23 Fri AM 09:59:40 EDT

> < >

> Subject: RE: singulair

>

> Lori,

>

>

>

> I was just wondering how long your daughter was on cimetidine? Was the

> cimetidine doing anything for her? We had our 29 mo. Old son on it now for

> 4 months and all it has done is effect the severity of the fevers.they are

> now up 104.5 instead of 105.9. It has not changed the frequency or duration

> so we are considering prednisone. If there is another alternative though I

> would certainly like to look at that first. I'm wondering if your

> Rheumatologist said anything about Singulair working on when

> Cimetidine did not. Sorry about all of the questions, but was looking for

> some more insight. To date the only options we have been given for Liam is

> Cimetidine and Prednisone (If he has ).

>

>

>

> Unfortunately Liam's coarse of is a little unusual so they are

> hesitant now to confirm the diagnosis and we will be trying to get the

> genetic testing done, but they are saying that even if we do the genetic

> testing that about 50% will come back negative because they just have not

> mapped all the mutations yet for the different genetic disorders and then we

> would try to get a clinical diagnosis by trying different medications to see

> if any work..the general plan was to try prednisone next and if that didn't

> work possibly cochicine and I was just wondering where Singulair would fit

> in to that plan..

>

>

>

> If any one has any insight/experience with this I would greatly appreciate

> it.

>

>

>

> Thank you,

>

> Tara

>

> Mom to Liam (29 mo. ? And Owen 6 yrs)

>

> Phila Area, PA

>

>

>

>

>

>

>

> singulair

>

>

>

> Hello all

> My daughter's rheumatologist has just switched her from cimetidine to

> singulair. Just curious if anyone has had any experiences with it - good or

> bad. Thanks

> Lori

> Mom to 21 months

>

>

>

>

>

>

[Guest guest]

Lori,

Thanks for responding.the information really helps. We just got a bunch of

new lab work back on Liam and are waiting for one more result before we

would change any of his medication. I know the Cimetidine really isn't

doing much but I have to say I've gotten used to 104.5 and going back to the

105.9 kind of scares me? The Rheumatologist will give me a call when the

final lab work comes back and I'm going to ask about trying the Singulair.

I know the prednisone works for a lot of families, but I'm just not ready

yet. I have a feeling he will be one of the children that get the episodes

twice as frequently and since we are averaging every 20 days..just not sure

if I could handle once every 10 days? He also gets very cranky before his

episodes and I'm kind of worried about what his behavior would be like on

steroids? I will try if necessary, but hoping something more benign such as

the Singulair might work.

I'm sorry to hear about your other daughter..and hope she did well with the

surgery and is recovering ok. We did talk to an ID Dr. - Long at St.

's (Philadelphia) who specializes in and she does recommend

a tonsillectomy, but only if she is 100% convinced that the child has

..and she really doesn't like taking them out unless nothing else is

working since they (the medical) community are still not really sure what

they do..she joked about finding out 80 years from now that your tonsils are

really important..who knows? She definitely would do it though if she is

convinced that the child has and said she had about 85% success rate.

Unfortunately she didn't think Liam " Fit " close enough and wouldn't do

the tonsils, but referred us to a great Rheumatologist at Dupont who

unfortunately doesn't think Liam matches closely enough to

diagnose..hence the additional testing we are doing and then the genetic

testing.

I work in Philadelphia also.we live in Collegeville and I thought that was a

bad commute..I can't image from Lancaster county..

I hope everybody is feeling well soon.both Sam and your other daughter!

Good luck with the Singulair..I will keep my fingers crossed and say some

prayers. Please keep me posted though..

Thanks!

Tara

Mom to Liam (29 mo.-?) and Owen (6yrs)

Philadelphia Area, PA

singulair

>

>

>

> Hello all

> My daughter's rheumatologist has just switched her from cimetidine to

> singulair. Just curious if anyone has had any experiences with it - good

or

> bad. Thanks

> Lori

> Mom to 21 months

>

>

>

>

>

>

[Guest guest]

> Tara,

My daughter is follwed by doctors at Hershey Medical Center. Her pediatrician is

also not convinced that she is truly but the rheumatologist would like to

treat her as such utnil the genetic testing comes back - which I am told my

insurance may fight him over.

I feel the same as you though. I told th rheumatologist that I didn't think I

could take the fevers closer together. I will talk to him as well before I make

up my mind about the tonsillectomy. The ENT seemed willing so I will confer with

her other doctors then I guess decide. I would love to be fever free for a while

here and I know she would too. I am sitting here typing one handed because she

is in a cycle and fussy and only mommy will do. My daughter also gets really

irritable for about 2-4 days before the fever breaks. Man the more I read from

other parents on here - oh the similarities we have!

Well I will keep in touch!

(and yes my husband's commute STINKS!!!!!!!)

Lori

Mom to 22 months

> From: " Tara " <taracevans@...>

> Date: 2006/06/23 Fri PM 04:12:14 EDT

> < >

> Subject: RE: RE: singulair

>

> Lori,

>

>

>

> Thanks for responding.the information really helps. We just got a bunch of

> new lab work back on Liam and are waiting for one more result before we

> would change any of his medication. I know the Cimetidine really isn't

> doing much but I have to say I've gotten used to 104.5 and going back to the

> 105.9 kind of scares me? The Rheumatologist will give me a call when the

> final lab work comes back and I'm going to ask about trying the Singulair.

> I know the prednisone works for a lot of families, but I'm just not ready

> yet. I have a feeling he will be one of the children that get the episodes

> twice as frequently and since we are averaging every 20 days..just not sure

> if I could handle once every 10 days? He also gets very cranky before his

> episodes and I'm kind of worried about what his behavior would be like on

> steroids? I will try if necessary, but hoping something more benign such as

> the Singulair might work.

>

>

>

> I'm sorry to hear about your other daughter..and hope she did well with the

> surgery and is recovering ok. We did talk to an ID Dr. - Long at St.

> 's (Philadelphia) who specializes in and she does recommend

> a tonsillectomy, but only if she is 100% convinced that the child has

> ..and she really doesn't like taking them out unless nothing else is

> working since they (the medical) community are still not really sure what

> they do..she joked about finding out 80 years from now that your tonsils are

> really important..who knows? She definitely would do it though if she is

> convinced that the child has and said she had about 85% success rate.

> Unfortunately she didn't think Liam " Fit " close enough and wouldn't do

> the tonsils, but referred us to a great Rheumatologist at Dupont who

> unfortunately doesn't think Liam matches closely enough to

> diagnose..hence the additional testing we are doing and then the genetic

> testing.

>

>

>

> I work in Philadelphia also.we live in Collegeville and I thought that was a

> bad commute..I can't image from Lancaster county..

>

>

>

> I hope everybody is feeling well soon.both Sam and your other daughter!

> Good luck with the Singulair..I will keep my fingers crossed and say some

> prayers. Please keep me posted though..

>

>

>

> Thanks!

>

> Tara

>

> Mom to Liam (29 mo.-?) and Owen (6yrs)

>

> Philadelphia Area, PA

>

>

>

> singulair

> >

> >

> >

> > Hello all

> > My daughter's rheumatologist has just switched her from cimetidine to

> > singulair. Just curious if anyone has had any experiences with it - good

> or

> > bad. Thanks

> > Lori

> > Mom to 21 months

> >

> >

> >

> >

> >

> >