Singulair

June 23, 2006

My name is a Kraybill

My son started having these episodes when he was quite young, although I can't

put a definite age to them--maybe 1 y.o. give or take a few months. He would

have a sudden onset of tight-sounding respirations with a barky cough and

inspiratory stridor. These episodes would come on VERY suddenly--one normal

breath, then a kind of tight sounding breath (wheezy) then it would be as though

he could barely breathe with loud stridor. We were so focused on his airway

that we didn't pay much attention to the fevers, although they weren't very

severe. He would be warm enough to touch to know that there was a fever, but we

were doing the croup dance at that point.

The docs told us that it was " croup caused by a viral respiratory infection "

although they happened so frequently and regularly that I was suspicious, and no

one else got sick. When he was about 4 1/2 or so we took him to a Pulmonologist

who felt that the episodes were most likely a reaction to something or asthma

and put him on Singulair. He never had another episode until he was taken off

the Singulair. Shortly thereafter, he started having horrid headaches and the

oral lesions appeared. In between the " croup " episodes, he was symptom-free.

Several times, before we started seeing the pulmonologist, he was prescribed a

short course of Prednisone for his airway and we did notice that the episodes

increased somewhat in frequency.

He started having killer headaches and GI symptoms about the same time that

the oral lesions started. He also has a generalized aching and the lesions are

slow to heal. The headaches have been diagnosed as migraines (strong family

history on both sides) but they do not respond to standard migraine meds.

Because no one can find a physical reason for the aching, he has been labelled

psychosomatic. The chronic pain/headaches/recurrent painful oral lesions have

led to major depression for him, so something else to add to the mix.

We don't have an official diagnosis, just suspicion by the allergist who also

worked with the immunology folks around here. He was empirically treated with

cimetidine and the lesions resolved.

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

Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

August 17, 2006

Tricia, my son is on Singulair for allergies, but I have been doing some

research and talking to the docs. There's an article you can read, relative

to HIDS (but may also be the same for ), on PubMed by a research team

in the Netherlands (Frenkel et al) titled " Increased urinary leukotriene

E(4) during febrile attacks in the hyperimmunoglobulinaemia D and periodic

fever syndrome " . In a nutshell (and please, medical people, correct me if

I'm wrong or misstate something here!), it seems that leukotrienes are

elevated during episodes. This group postulated that an anti-leukotriene

drug, like Singulair, could have a positive effect during fevers. Our own

experience (and we've only been on it for a little while) has been that the

frequency of Ben's fevers, and the duration of the fevers themselves, are

diminishing. He still complains of periodic joint pain and the occasional

tummy ache, but the temps are not as high as they used to be - we rarely go

above 104F anymore. The only downside I've seen with the drug is that our

son's fevering is no longer as predictable as before. Prior to Singulair,

he fevered exactly every 11 days. But I'll trade less fevering for more

unpredictability any time!

Kate, mom to Ben, 3 yrs old (diagnosed ; possible HIDS)

August 17, 2006

My daughter almost always complains of leg pain, sometimes to the point that she

will not walk. Trish

triciaginis <triciaginis@...> wrote: Brenden is participating in

an asthma study right now for the

medication singulair. I was reading some of the posts and noticed that

some of you mentioned trying singulair for and was wondering if

you found it to be helpful. We don't have a diagnosis yet, but we are

beginning to think that he has . We are watching him each bout

and I am supposed to watch for swollen joints and redness the next

time. He always complains of " my whole body hurts " but not

specifically joint pain. Do you notice specifically joint pain in your

children? I appreciate the input.

Tricia

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

Stay in the know. Pulse on the new .com. Check it out.

August 17, 2006

> My daughter is taking singulair - it was prescribed because it is currently I

guess a trial med for some of the periodic fever syndrome. The first two

episodes on the med she had decreased temps (from 105 - 102 ish) but still had

all her other symptoms (she is not typical , so we are still undergoing

testing to see if we can figure out a diagnosis). Now this is the time she is

due for a fever. For the past few days she has been acting like she does when

fevering (very irritable, complaining of " ows " - she is only just two and can't

make other complaints, and her glands have been swollen) I am not sure if a

fever will come in a few days or if she skipped it this time but so far, no

temp. That is my experience so far. Hope it helps.

Lori

Mom to four daughters including (2) ?pfs

> From: " triciaginis " <triciaginis@...>

> Date: 2006/08/17 Thu AM 01:27:23 EDT

>

> Subject: singulair

>

> Brenden is participating in an asthma study right now for the

> medication singulair. I was reading some of the posts and noticed that

> some of you mentioned trying singulair for and was wondering if

> you found it to be helpful. We don't have a diagnosis yet, but we are

> beginning to think that he has . We are watching him each bout

> and I am supposed to watch for swollen joints and redness the next

> time. He always complains of " my whole body hurts " but not

> specifically joint pain. Do you notice specifically joint pain in your

> children? I appreciate the input.

> Tricia

>

August 17, 2006

Tricia,

Jarrod specifically mentions pain in his legs, knees and feet. I never

notice redness or swelling, but he refuses to walk.

(SWFL)

Mother of Jarrod

On Thu, 17 Aug 2006 05:27:23 -0000 " triciaginis " <triciaginis@...>

writes:

Brenden is participating in an asthma study right now for the

medication singulair. I was reading some of the posts and noticed that

some of you mentioned trying singulair for and was wondering if

you found it to be helpful. We don't have a diagnosis yet, but we are

beginning to think that he has . We are watching him each bout

and I am supposed to watch for swollen joints and redness the next

time. He always complains of " my whole body hurts " but not

specifically joint pain. Do you notice specifically joint pain in your

children? I appreciate the input.

Tricia

August 17, 2006

Tricia,

We haven't got a diagnosis yet - but Aidan's neck will hurt - to the

point of not turning it. We have been to ER several times thinking

menengitis - but it wasn't. His legs will also hurt - he won't walk

down the stairs and once his hands hurt. So I don't know. But I hope

that this info. will help you in some small way.

Hannah

>

> Brenden is participating in an asthma study right now for the

> medication singulair. I was reading some of the posts and noticed

that

> some of you mentioned trying singulair for and was wondering

if

> you found it to be helpful. We don't have a diagnosis yet, but we

are

> beginning to think that he has . We are watching him each bout

> and I am supposed to watch for swollen joints and redness the next

> time. He always complains of " my whole body hurts " but not

> specifically joint pain. Do you notice specifically joint pain in

your

> children? I appreciate the input.

> Tricia

>

August 17, 2006

Hannah was started on Singulair in May and has had a complete break

in fevers. She does however still have all of the other symptoms.

Her joint pain and swelling being the most significant for her. We

were at NIH August 1st and that have put her on a NSAID which seems

to be helping.

She started school (Pre-K) Friday and until today has done well.

Today the teacher called me in a panic at work. It was 95 degrees

out today and they took the children out for recess for Hannah this

is a bad idea. One we covered in her 504 plan. I don't know how

everyone elses child is in the heat but it will bring on Hannah's

symptoms in a matter of minutes. Hannah doesn't sweat very well and

she will turn bright red and her eyes will swell and she becomes

extremely weak and fatigued. Well that happened today and the

teachers started to panic a little which scared Hannah and made her

start crying. Needless to say I was not happy with the whole

situation. Of course the whole situation could have been avoided if

they had followed the plan and kept her inside. I think maybe this

taught them a valuable lesson. We are going to try it again tomarrow

after I have a talk with the teachers. Although I am glad they over

reacted instead of under reacted. If they had left Hannah there to

continue to play in the heat we probably would be at the hospital.

Well thanks for letting me vent!

Carey mom to Hannah Rose (4 years old Clinical HIDS)

ville, TN

August 17, 2006

Our son too has more muscle ache pain in his legs, does not seem to be at the

joints. Which typically requires us to give him Motrin because he is in so much

pain.

Patti, mother of Brady 7

triciaginis <triciaginis@...> wrote: