Re: Any Interest in Taking a Survey?

[Guest guest]

I will participate too,very good idea!!!

Sacora

[Guest guest]

I would be happy to participate.

 

Ruthie, mom to , 3.5, since 3 months

[Guest guest]

Great idea. I'd be happy to participate. Perhaps also ask about the

approximate age of onset of symptoms. Jen(mom to Sara 38 months, fevering since

24 months)

[Guest guest]

I will participate.....this information will be very interesting and

helpful to everyone.

[Guest guest]

I will participate.....this information will be very interesting and

helpful to everyone.

[Guest guest]

I will definately participate with information regarding our son.  Maybe have a

generic question about other symptoms just to see if there are some we don't

realize are similar.

 

Pruden

 

[Guest guest]

I will definately participate with information regarding our son.  Maybe have a

generic question about other symptoms just to see if there are some we don't

realize are similar.

 

Pruden

 

[Guest guest]

I'd also love to participate.  In addition to 's good questions, I'm

also curious about 2 other questions:

1.  Does your child have any known or suspected food

allergies/sensitivities or other allergies? 

2.  Does your child have any known nutritional deficiencies? (My son's blood was

tested and was found to be low in iron along with some other deficiencies.  With

supplementation, we had a 6-7 month hiatus from the fevers.  When we took him

off the iron, the fevers returned.  Maybe just a coincidence, but the doc said

to take him off now that his iron level was in the normal range.)

Thanks so much for doing this!

[Guest guest]

I am very happy to participate Nick.

Inga

[Guest guest]

I am interested to participate in a survey.

(mother of Raffaele, 7 years old)

[Guest guest]

I am interested to participate in a survey.

(mother of Raffaele, 7 years old)

[Guest guest]

I am in for the survey. Killelea, son 7 Pfapa for 3 years now.

[Guest guest]

I am in for the survey. Killelea, son 7 Pfapa for 3 years now.

[Guest guest]

We were told Sophia was a little bit anemic after a recent blood test.

[Guest guest]

I am interested in participating, thank you for organizing this

B

[Guest guest]

Hi Nick,

We would be happy to participate.

April

[Guest guest]

I will participate as well

 

Twin boys 4 years old

[Guest guest]

I will participate as well.

Short

[Guest guest]

I am interested in the survey. My son Eli had cyclical fevers for 1 1/2 years

starting at age

18 months. He then took a break for a year, and now I fear the fevers are

back. He is now

4. It seems to much milder than before.

When you are surveying people, I am curious, what kinds of doctors are seeing

your children?

Rheumatologist? Pediatric Infectious Disease? ENT? etc.

Thanks for organizing this survey; can't wait to read the results.

Jen Harvey

Prescott

[Guest guest]

I would be more than happy to participate in the survey.

[Guest guest]

Count me in buddy.          Steve.

[Guest guest]

I would love to take this, I think more research on this disorder would be

great.

[Guest guest]

I would love to participate. Has anybody looked at family history of t & a

prob? I would love to see that included.

Ann

[Guest guest]

I would love to participate. Has anybody looked at family history of t & a

prob? I would love to see that included.

Ann

[Guest guest]

yes!

>

> I'm thinking of surveying all of you across some common dimensions

so

> that we can build a database of information that could be passed

along

> to the NIH or other researchers. If I set up a link to the

survey,

> would you be interested in participating? If we get an

overwhelming

> response in support of this, I will go ahead to set this up and

then

> share the results with all. Let me know if you are intending on

> participating, as well as thoughts on questions and I will soft

through

> them. Some initial thoughts include probing areas such as (in no

> particular order):

> 1. Sex of the child

> 2. Age of the child

> 3. Cycle timing, frequency, and duration

> 4. Symptom severity across fevers, headaches, vomitting, etc..

> 5. CBC/Blood Work Information

> 6. Nationality of the family/child

> 7. Age of onset and/or age of cessation of symptoms

> 8. Treatment options and effectivness (cimetidine, singulair,

> prednisone, T & A, et al.)

> 9. T & A and duration of cessation of symptoms

> 10. Cycle frequency after prednisone administration

> 11. Country, region, city/town in which you live and/or in which

the

> child has been raised

> 12. Any challenges the child encountered that were distinctive

thusfar

> in their life (jaundice, infection, reflux, etc..)

>

> I'm sure there will be more, so there's much more to do. Let me

know.

>