Survey

[Guest guest]

I am 30 also, and have had Samters for a long time, and I had a easy

home birth with a very gentle transition...directly into warm water,

calm and peacefull. I was also nursed until bet. ages 2 and 3. My dad

also has Samters, and has had it since he was a young child.

This condition is genetic as far as I can tell. I have experienced much

relief from Aspirin desense, though I don't know how my pancrease is

going to do in the long run with taking so much Aspirin. I haven't

needed oral prednisone or antibiotics or polypectomy surgury now for 5

1/2 years since I did the desensitization and went on a gluten-free

diet. I still can rarely if ever smell (as I do have polyps) but my

asthma is very well controlled and I can always breath easily through my

nose at this point. I have found the sinus rinse with pulmicort

respules to be very helpful also. I avoid all menthol, mint,

wintergreen and peppermint flavored products (inc. toothpaste and

mouthwash) as well as sulphites and nitrates containing foods as they

clearly aggravate my condition (which I figured out by age 12). I also

don't use sunscreens or creams containing salicilates or almond oil, as

they will aggravate my lungs and polyps.

Perscriptions I have to keep breathing through both my nose and mouth are:

Aspirin 1000mg/day

Nasacort AQ

Singulair 10 mg

Loratadine (antihistamine)

Pulmicort turbuhaler or flexhaler 2 puffs/day

Sinus Rinse with Pumicort Respule added

And with that I have avoided surgery now for 5+ years.

--

Beldon

Body Integrity

[Guest guest]

Hi , thenks for your post - this really emphasises a genetic link rather than anything to do with a birth trauma! You seem to have a good control over this condidtion. Why do you eat gluten free? I dabble with gluten free food, but haven't fully made the transition yet, regards, Becky Beldon <abeldon@...> wrote: I am 30 also, and have had Samters for a long time, and I had a easy home birth with a very gentle transition...directly

into warm water, calm and peacefull. I was also nursed until bet. ages 2 and 3. My dad also has Samters, and has had it since he was a young child. This condition is genetic as far as I can tell. I have experienced much relief from Aspirin desense, though I don't know how my pancrease is going to do in the long run with taking so much Aspirin. I haven't needed oral prednisone or antibiotics or polypectomy surgury now for 5 1/2 years since I did the desensitization and went on a gluten-free diet. I still can rarely if ever smell (as I do have polyps) but my asthma is very well controlled and I can always breath easily through my nose at this point. I have found the sinus rinse with pulmicort respules to be very helpful also. I avoid all menthol, mint, wintergreen and peppermint flavored products (inc. toothpaste and mouthwash) as well as sulphites and nitrates containing foods as they clearly aggravate my condition

(which I figured out by age 12). I also don't use sunscreens or creams containing salicilates or almond oil, as they will aggravate my lungs and polyps. Perscriptions I have to keep breathing through both my nose and mouth are:Aspirin 1000mg/dayNasacort AQSingulair 10 mgLoratadine (antihistamine)Pulmicort turbuhaler or flexhaler 2 puffs/daySinus Rinse with Pumicort Respule addedAnd with that I have avoided surgery now for 5+ years.-- BeldonBody Integrity

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[Guest guest]

I was breast fed for 7 months, (low birth weight, 2.8 kg) developed Samters when I was 10, now I am 48.

Re: survey

i was breastfed............ I'm guessing until I started to drink from a cup.

Diane

[Guest guest]

Thanks everyone for responding to my survey. No clear pattern is emerging however... Thanks again, danaBerna Bridge <bernabridge@...> wrote: I was breast fed for 7 months, (low birth weight, 2.8 kg) developed Samters when I was 10, now I am 48. -----

Original Message ----- From: jprdlr samters Sent: Saturday, July 07, 2007 6:55 AM Subject: Re: survey i was breastfed............ I'm guessing until I started to drink from a cup. Diane

[Guest guest]

,

I think it is a good idea. My only suggestion

you don't ask or Rose run it. I think they are to busy now.

They are still working on the poll from last July.

Just food for thought.

>

> Hi all,

>

> My discussion on relationships or lack their of have

> created a lot of great feedback, it's nice to know I

> am not the only lp woman that feels this way.

>

> It got me thinking, I would love to survey

> annonymously people 18+ at the conference on various

> issues I've brought up to see exactly how lp's are

> feeling. Like I've said before, LPA is awesome in

> terms of everything medical, but when it comes to

> social/emotional/mental, there really is not anything

> there. I love conferences and want to keep going but

> I can only go to the pseudo workshop so often before

> it has no impact anymore because I know the info.

>

> Most of the questions would be simple such as gender,

> age, highest level of education, preference of height

> in terms of dating...etc

> Because it would be annonymous I'd have no issue

> making public my results.

>

> What do you all think?

>

> -

>

>

>

>

>

______________________________________________________________________

______________

> Take the Internet to Go: Go puts the Internet in your pocket:

mail, news, photos & more.

> http://mobile./go?refer=1GNXIC

>

[Guest guest]

Jim,

As usual you provide a much needed chuckle.

I am sure that Ms. is certainly qualified to take her idea and

run with it. It's been an interesting topic that deserves flushing

out. And it would be a nice addition to any conference.

I certainly look forward to seeing her idea blossom. And if she were

to ask for support, I'd be right there to provide it.

(who is going back to keeping busy)

-- In dwarfism , " Jim " <jimcofpa@...> wrote:

>

> ,

>

> I think it is a good idea. My only suggestion

> you don't ask or Rose run it. I think they are to busy now.

> They are still working on the poll from last July.

> Just food for thought.

>

> >

> > Hi all,

> >

> > My discussion on relationships or lack their of have

> > created a lot of great feedback, it's nice to know I

> > am not the only lp woman that feels this way.

> >

> > It got me thinking, I would love to survey

> > annonymously people 18+ at the conference on various

> > issues I've brought up to see exactly how lp's are

> > feeling. Like I've said before, LPA is awesome in

> > terms of everything medical, but when it comes to

> > social/emotional/mental, there really is not anything

> > there. I love conferences and want to keep going but

> > I can only go to the pseudo workshop so often before

> > it has no impact anymore because I know the info.

> >

> > Most of the questions would be simple such as gender,

> > age, highest level of education, preference of height

> > in terms of dating...etc

> > Because it would be annonymous I'd have no issue

> > making public my results.

> >

> > What do you all think?

> >

> > -

> >

> >

> >

> >

> >

> ______________________________________________________________________

> ______________

> > Take the Internet to Go: Go puts the Internet in your pocket:

> mail, news, photos & more.

> > http://mobile./go?refer=1GNXIC

> >

>

[Guest guest]

,

It was only a joke

> > >

> > > Hi all,

> > >

> > > My discussion on relationships or lack their of have

> > > created a lot of great feedback, it's nice to know I

> > > am not the only lp woman that feels this way.

> > >

> > > It got me thinking, I would love to survey

> > > annonymously people 18+ at the conference on various

> > > issues I've brought up to see exactly how lp's are

> > > feeling. Like I've said before, LPA is awesome in

> > > terms of everything medical, but when it comes to

> > > social/emotional/mental, there really is not anything

> > > there. I love conferences and want to keep going but

> > > I can only go to the pseudo workshop so often before

> > > it has no impact anymore because I know the info.

> > >

> > > Most of the questions would be simple such as gender,

> > > age, highest level of education, preference of height

> > > in terms of dating...etc

> > > Because it would be annonymous I'd have no issue

> > > making public my results.

> > >

> > > What do you all think?

> > >

> > > -

> > >

> > >

> > >

> > >

> > >

> >

______________________________________________________________________

> > ______________

> > > Take the Internet to Go: Go puts the Internet in your

pocket:

> > mail, news, photos & more.

> > > http://mobile./go?refer=1GNXIC

> > >

> >

>

[Guest guest]

Nice idea and I certainly wish you luck with it.

Sadly, recent events concerning " survey's " leaves most people wondering

about the meaning of " confidential " or " annonymous "

It also leaves people wondering if (and when), the results of such a survey

will be promulgated. More to the point IF they will actually be made

available to those who actually took part in the survey, since there has

been great debate on here about the rights of participants and the legal

obligations to divulge (or not) the findings of the designers.

I sincerely do hope you get this off the ground, if for no other reason that

to let small statured people know, they are not alone and we all have

similar problems.

Best wishes

Fred

Survey

Hi all,

My discussion on relationships or lack their of have

created a lot of great feedback, it's nice to know I

am not the only lp woman that feels this way.

It got me thinking, I would love to survey

annonymously people 18+ at the conference on various

issues I've brought up to see exactly how lp's are

feeling. Like I've said before, LPA is awesome in

terms of everything medical, but when it comes to

social/emotional/mental, there really is not anything

there. I love conferences and want to keep going but

I can only go to the pseudo workshop so often before

it has no impact anymore because I know the info.

Most of the questions would be simple such as gender,

age, highest level of education, preference of height

in terms of dating...etc

Because it would be annonymous I'd have no issue

making public my results.

What do you all think?

-

__________________________________________________________

Take the Internet to Go: Go puts the Internet in your pocket: mail,

news, photos & more.

http://mobile./go?refer=1GNXIC

[Guest guest]

--- FRED wrote:

> Sadly, recent events concerning " survey's " leaves most people

> wondering about the meaning of " confidential " or " annonymous "

> It also leaves people wondering if (and when), the results of such

> a survey will be promulgated. More to the point IF they will

> actually be made available to those who actually took part in the

> survey, since there has been great debate on here about the rights

> of participants and the legal obligations to divulge (or not) the

> findings of the designers.

It's funny in Wikipedia comments that use the terms " most

people " " many " " a great deal of opinions " and such are not allowed

because they are considered to be weasel words. That is they are

phrases that sound authentic but really have no proof to support them

them. Who are these " most people " that have wondered about

confidentiality and anonymity of the survey? How many have people

have complained? And if they have only complained to you, Fred, I

must ask why since you were not part of the project?

I truly am sorry that you feel and I have taken too long to

produce the results. I know I have said I am busy with work but I

have not described what I do. Allow me to so perhaps you can get a

better idea of what I am doing with my days and not just eating bon-

bons & watching re-runs of Law & Order. I work as a substance abuse

counselor at a non-profit organization. I have an active caseload of

35 clients (mental health, anger management, family & marriage

counseling in addition to substance abuse). In addition to these

clients I run 4 groups per week for people in various stages of

recovery and various ages (my groups go from the only high school

group in town to adult DUI offenders); I do approx 10 intakes per

week (the initial evaluation for new clients) and handle 15-20 crisis

calls per week. In addition to my regular duties, for the past 4

weeks and for the next 2, I am covering another person's job which is

working with 12 students at an alternative high school because that

person no longer works here yet those classes need to be completed.

On a good week I only put in 60 hours. And the best part is I still

only get paid for 40. Ah, the joys of " flex time. "

I'm not understanding this, Fred. You complain regularly about the

survey, the lack of confidentiality, who " owns " the results and so

on. You do not bring these issues to & I privately -- and we

have invited you time & time again to contact us through our well-

known email addresses -- but rather you chose to make passive

accusations to us publicly. If you think our work is so flawed, then

why the rush to see it?

Rose

ps -- yeah, I just gave up my 30 minute lunch break on this reply.

[Guest guest]

A 60 hour week?! Oh My! Welcome to the club Rose.

You seem to be doing quite a bit of good for people at your job, but honestly, I

think many of us heard the worls smallest violin playing in the background. 

We all work. However, we all didn't choose to write a survey and ask folks to

fill it out. Folks who took their very own valuable time  answer your questions

that now sit on someone's PC.

To only count your precious time and 's as valuable is self-centered at

best. And if I recall the number of postings by the latter on this and the Adult

list one might question why one of you couldn't deliver upon your commitment to

the volunteer s who supplied you with free data. 

-

Re: Survey

dwarfism

> On a good week I only put in 60 hours. And the best part is I

> still

> only get paid for 40. Ah, the joys of " flex time. "

> ps -- yeah, I just gave up my 30 minute lunch break on this reply.

>

>

[Guest guest]

Tony,

Just a guess, but I am willing to bet the income disparity between your 60

hours per week and Rose's is quite large. And in " The Big Picture " , I would

venture Rose's job is more valuable to society at large than advertising.

I don't hear any violins...

Bill

On 10/11/07, tonysoares@... <tonysoares@...> wrote:

>

> A 60 hour week?! Oh My! Welcome to the club Rose.

>

> You seem to be doing quite a bit of good for people at your job, but

> honestly, I think many of us heard the worls smallest violin playing in the

> background.

>

> We all work. However, we all didn't choose to write a survey and ask folks

> to fill it out. Folks who took their very own valuable time answer your

> questions that now sit on someone's PC.

> To only count your precious time and 's as valuable is self-centered

> at best. And if I recall the number of postings by the latter on this and

> the Adult list one might question why one of you couldn't deliver upon your

> commitment to the volunteer s who supplied you with free data.

>

> -

>

>

[Guest guest]

Bill, there you go again trying to be the be brain in the room. Do you know that

in my " job in

advertising " that you minimize I have also done pro bono work and worked at

agencies that

donate time for charities such as The GMHC, The United Way, NY Cares, The United

Negro

College Fund and Esquire's Annual winter Coat Drives to name a few.

As for salaries, well, it takes money to fund non profits, and I'm not Bragging,

but last I

checked I donated more than 20% of my net income to charities. BECAUSE OF

ADVERTISING

BILL.

That's above what I donate to my Church (just so you don't try to shoot a hole

in that too)

I don't brag about what I do or donate, but if you read LPA today, but as an LPA

officer you

should be well aware of what I've donated in the past.

Your conduct is unbecomming of an officer that leads an organization that

benifits from

donations (large or small) from folks like me.

There isn't a non-profit cause, 503c 3 or human rights group that hasn't

benefitted from the

countless hours donated by this industry.

I've also volunteered at community centers that help kids in public housing and

homless

shelters in my county. Without pay.

I don't bring it up but since you started the flame wars...

Forget Violins, I have an Elctric guitar and some huge Amps!

Re: Re: Survey

dwarfism

> Tony,

> Just a guess, but I am willing to bet the income disparity between

> your 60

> hours per week and Rose's is quite large. And in " The Big

> Picture " , I would

> venture Rose's job is more valuable to society at large than

> advertising.

> I don't hear any violins...

>

> Bill

>

>

> On 10/11/07, tonysoares@... <tonysoares@...>

> wrote:>

> > A 60 hour week?! Oh My! Welcome to the club Rose.

> >

> > You seem to be doing quite a bit of good for people at your job, but

> > honestly, I think many of us heard the worls smallest violin

> playing in the

> > background.

> >

> > We all work. However, we all didn't choose to write a survey and

> ask folks

> > to fill it out. Folks who took their very own valuable time

> answer your

> > questions that now sit on someone's PC.

> > To only count your precious time and 's as valuable is self-

> centered> at best. And if I recall the number of postings by the

> latter on this and

> > the Adult list one might question why one of you couldn't deliver

> upon your

> > commitment to the volunteer s who supplied you with free data.

> >

> > -

> >

> >

>

>

>

[Guest guest]

Maybe 3 will be the charm and both (or in fred fashion, " all " who

complain) will read:

Re: on future polls

If you all remember, we did not give a deadline for the publication of

the results of 'our' survey. So if one of us did state the results

would be published " shortly " , then it is in the eye of the beholder as

to what 'shortly' is interpreted as.

1. I was amazed at the amount of responses

2. I was fascinated by what the responses reveal

The project is worth giving serious consideration to, thus I (and I'm

sure Rose agrees) will not jump in and just post numbers because of

the constant postings on this list calling for results.

Just as a double check I looked through the archives for this board

and CANNOT find ANY POST that states a deadline for the publication of

the results and in the manner in which they will be disclosed. If

anyone finds this a post, please state the reference number.

When we have results, this discussion list will be one of the first to

know, in one format or another.

Update, October 11, 2007:

The more I think of it, the more I'd rather see this presented as more

than just a post to this list (where 'some' people will then proceed

to rip it apart just for their amusement). But, the delivery of

results is yet to be determined.

From reading the reoccurring request (and snippy comments), seems like

I know " some/lots/most " of those requesting/demanding results will

never be wine makers when they grow up. [before responding, think

outside of the growth box]

This particular discussion confirms why in such a large community, so

few volunteer. It isn't worth the effort and the bruising. The barrage

from over anxious gorillas outweigh the good that it can possibly do.

My best wishes to if she decides to take on any quest for

answers; watch out for those overbearing primates from the Gorillini

Tribe whose bananas seem overdue for peeling.

(who dreams of one day eating lunch without a meeting going on at the

same time; really doesn't do much for the digestion. And Rose, I too

get no bon-bons, maybe an occasional brownie and 'gosh darn' those are

few and far in-between.)

> >

> > A 60 hour week?! Oh My! Welcome to the club Rose.

> >

> > You seem to be doing quite a bit of good for people at your job, but

> > honestly, I think many of us heard the worls smallest violin

playing in the

> > background.

> >

> > We all work. However, we all didn't choose to write a survey and

ask folks

> > to fill it out. Folks who took their very own valuable time

answer your

> > questions that now sit on someone's PC.

> > To only count your precious time and 's as valuable is

self-centered

> > at best. And if I recall the number of postings by the latter on

this and

> > the Adult list one might question why one of you couldn't deliver

upon your

> > commitment to the volunteer s who supplied you with free data.

> >

> > -

[Guest guest]

On 10/11/07, tonysoares@... <tonysoares@...> wrote:

> Bill, there you go again trying to be the be brain in the room.

Not too hard, considering the competition...(no offense to anyone else

in the " room " but that was a hanging curveball over the plate...)

> Do you know that in my " job in advertising " that you minimize I have also

done pro bono work and worked at agencies that donate time for charities such as

The GMHC, The United Way, NY Cares, The United Negro College Fund and Esquire's

Annual winter Coat Drives to name a few.

I applaud you. As a fellow person of conscience and of a similar

socioeconomic background, I have also done my share of pro bono work

and donations. But I remember a passage from an ancient text that

read something to the effect: " Don't let your right hand know what

your left hand is doing... "

(I wonder if they sell St. Soares Votive Candles on Ebay?)

> As for salaries, well, it takes money to fund non profits, and I'm not

Bragging, but last I

checked I donated more than 20% of my net income to charities. BECAUSE

OF ADVERTISING BILL. That's above what I donate to my Church (just so

you don't try to shoot a hole in that too)

And some might argue that the reason you have the salary you do is

because of a distorted world view that places a higher priority on

Madison Avenue than on social services. But it is good of you to

assuage your guilt and give back to society.

> I don't brag about what I do or donate,

You don't?

>but if you read LPA today, but as an LPA officer you should be well

aware of what I've donated in the past.

I'm actually only aware of what you have earmarked for programs in the

year I've been an officer. Which I have publicly thanked you for.

> Your conduct is unbecomming of an officer that leads an organization that

benifits from donations (large or small) from folks like me. There isn't a

non-profit cause, 503c 3 or human rights group that hasn't benefitted from the

countless hours donated by this industry.

So, run against me in the next election. The filing deadline is Feb.

22, 2008. (BTW, there is a difference between conduct and stated

opinions. Besides, this list, as well have all pointed out numerous

times, is not affiliated with LPA.) Are you going to get your cronies

to call Lois on her private cell number again to gripe about me? (She

LOVES that)

> I've also volunteered at community centers that help kids in public housing

and homless

> shelters in my county. Without pay.

Good for you. So have I.

> I don't bring it up but since you started the flame wars...

I started the flame wars??? Selective memory is a wonderful thing

(note dripping irony). Hint: earlier today you posted a message that

had something to do with the " world's smallest violins. "

> Forget Violins, I have an Elctric guitar and some huge Amps!

I hope you can play the guitar better than you can a violin.

Personally, I prefer bagpipes, spoons, or a jug band.

>

Bill

[Guest guest]

Re: Survey

dwarfism

> This particular discussion confirms why in such a large community, so

> few volunteer. It isn't worth the effort and the bruising. The barrage

> from over anxious gorillas outweigh the good that it can possibly do.

> My best wishes to if she decides to take on any quest for

> answers; watch out for those overbearing primates from the Gorillini

> Tribe whose bananas seem overdue for peeling.

>

>

> (who dreams of one day eating lunch without a meeting going on at the

> same time; really doesn't do much for the digestion. And Rose, I too

> get no bon-bons, maybe an occasional brownie and 'gosh darn' those are

> few and far in-between.)

,

Your Gorilla referenceis offensive, do I take it as directed at me? Yes. Why?

Because Only 3

folks wrote about your poll yesterday.

If I was to use another name for a snippy , snappy canine and applied it to

anyone I would

be placed on moderation and be called sexist.

My pointing is we can do without the Name calling.

Besides Bananas are much healthier than Bon Bons.

On an unrelated but sorta sidebar subject, I always love the folks (at my own

work place)

that complain about working through lunch, but always seem to have time to be

outside

smoking like chimneys on company time or blogging at their desks past 5 but get

upset when

they are asked to work late...

Tony

[Guest guest]

LP debators -

As I'm friends with most of you who are in the midst of all this

arguing, I think we can say the list has definitely veered of course

from the topic of the survey. And even with the survey in question,

what was the solution...? Or did I miss it?

So can we just stop with the mudslinging - or if you wish to argue

publicly, at least keep it to the topic's solution at hand?

Irene

>

>

>

> Re: Survey

> dwarfism

>

> > This particular discussion confirms why in such a large community, so

> > few volunteer. It isn't worth the effort and the bruising. The barrage

> > from over anxious gorillas outweigh the good that it can possibly do.

> > My best wishes to if she decides to take on any quest for

> > answers; watch out for those overbearing primates from the Gorillini

> > Tribe whose bananas seem overdue for peeling.

> >

> >

> > (who dreams of one day eating lunch without a meeting going on at the

> > same time; really doesn't do much for the digestion. And Rose, I too

> > get no bon-bons, maybe an occasional brownie and 'gosh darn' those are

> > few and far in-between.)

>

>

> ,

>

> Your Gorilla referenceis offensive, do I take it as directed at me?

Yes. Why? Because Only 3

> folks wrote about your poll yesterday.

>

> If I was to use another name for a snippy , snappy canine and

applied it to anyone I would

> be placed on moderation and be called sexist.

>

> My pointing is we can do without the Name calling.

>

> Besides Bananas are much healthier than Bon Bons.

>

> On an unrelated but sorta sidebar subject, I always love the folks

(at my own work place)

> that complain about working through lunch, but always seem to have

time to be outside

> smoking like chimneys on company time or blogging at their desks

past 5 but get upset when

> they are asked to work late...

>

> Tony

>

[Guest guest]

In a message dated 6/17/2008 11:35:19 A.M. Eastern Daylight Time,

carneyval@... writes:

Ok, Here's a Survey which may help each other see how this group relates.

Hope each takes the survey so others can come to seeing what is similar. All

you have to do is Copy and Paste this to email and send back to the group.

These are questions about the JA child.

1. Weight at Birth? 8 lbs, 7 oz

2. Did the child have Jaundice? no

3. Was the child Breastfed? yes -

4. If Breastfed how long? 10 months

5. Weeks Gestation at Birth? 40

6. 1st year any Hospital Stay? no

7. 1st yr any Infections? no

8. What birth order is child? first

9. Was child Conceived Natural or by other means? natural

10. What age did Immunizations start? regular schedule

11. Any reactions to any of the Immunization shots? no

12. Has the child had a Blood Transfusion? no

13. What type of work do You and Spouse do? consultant rail transportation;

consultant - history / archeology

14. Was a Immunization shot given 6 months prior to Symptoms of JA? no

15. If so what age? n/a

16. So you live in the City, Rural, or Suburb? suburb

17. Do you live near a Factory, Chemical, Farm land? no

18. Did you feed the child Baby Food or made your own at home? baby food

19. If you fed the child Baby food what brand was it? varied

20. If the child ate baby food What variety did the child eat? everything

21. Does a Sibling have any Issues? If so please list. no

22. Does any member of the Family have any Health issues? Psoriasis-mom

If so list relationship to child and what Health Issues.Most N/A - except

for some autoimmune issues in the family

23. Is child allergic to anything? seasonal allergies

If so please list.

24. How close are you to a Ped. Rhuemy? hour

25. How long did it take for a Diagnosis? 2 months

26. What State are you in? new jersey

27. Does the Weather make child worse? haven't observed

28. What Medications does the child take? Methotrexate, folic acid,

29. Does the Medications help? yes

30. In the last yr How many Flares has the child had? 1

31. What type of Juvenile Arthritis does the child have? poly

32. Have you ever been to a AJAO Conference? no

33, Have you ever been to a Arthritis Walk or Juvenile Arthritis Event? Yes

son helps organize our local walk

34. During Pregnancy did you take any Medication? yes - tetracycline.

If so what?

35. Was child delivered Natural or by C-Section?? natural

36. How many Hours of Labor? first felt contractions 24 hrs prior; 4 minute

intervals 10 hours prior; actual pushing at 6 cm dilation 20 minutes.

[Non-text portions of this message have been removed]

O'Connor

President

Rail Systems, Inc.

22 North Greenwood Ave.

Hopewell, NJ 08525

609-466-4114

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

The most significant item prior to onset was parvo b virus infection to

which my son did not have much of a reaction - very slight rash. Maybe 4 weeks

later he began to have arthritis symptoms that we credited to growing pains

(age 9 at the time). The symptoms became increasingly debilitating until he

could not walk down stairs and he was swollen in ankles, knees and hands. We

thought he had lymes disease. He was treated for this at first. Wwhen he did

not respond after about 4 more weeks we were sent to CHOP. They identified

it right away.

In a message dated 6/17/2008 4:31:56 P.M. Eastern Daylight Time,

cmjoconnor@... writes:

In a message dated 6/17/2008 11:35:19 A.M. Eastern Daylight Time,

_carneyval@..._ (mailto:carneyval@...) writes:

Ok, Here's a Survey which may help each other see how this group relates.

Hope each takes the survey so others can come to seeing what is similar. All

you have to do is Copy and Paste this to email and send back to the group.

These are questions about the JA child.

1. Weight at Birth? 8 lbs, 7 oz

2. Did the child have Jaundice? no

3. Was the child Breastfed? yes -

4. If Breastfed how long? 10 months

5. Weeks Gestation at Birth? 40

6. 1st year any Hospital Stay? no

7. 1st yr any Infections? no

8. What birth order is child? first

9. Was child Conceived Natural or by other means? natural

10. What age did Immunizations start? regular schedule

11. Any reactions to any of the Immunization shots? no

12. Has the child had a Blood Transfusion? no

13. What type of work do You and Spouse do? consultant rail transportation;

consultant - history / archeology

14. Was a Immunization shot given 6 months prior to Symptoms of JA? no

15. If so what age? n/a

16. So you live in the City, Rural, or Suburb? suburb

17. Do you live near a Factory, Chemical, Farm land? no

18. Did you feed the child Baby Food or made your own at home? baby food

19. If you fed the child Baby food what brand was it? varied

20. If the child ate baby food What variety did the child eat? everything

21. Does a Sibling have any Issues? If so please list. no

22. Does any member of the Family have any Health issues? Psoriasis-mom

If so list relationship to child and what Health Issues.Most N/A - except

for some autoimmune issues in the family

23. Is child allergic to anything? seasonal allergies

If so please list.

24. How close are you to a Ped. Rhuemy? hour

25. How long did it take for a Diagnosis? 2 months

26. What State are you in? new jersey

27. Does the Weather make child worse? haven't observed

28. What Medications does the child take? Methotrexate, folic acid,

29. Does the Medications help? yes

30. In the last yr How many Flares has the child had? 1

31. What type of Juvenile Arthritis does the child have? poly

32. Have you ever been to a AJAO Conference? no

33, Have you ever been to a Arthritis Walk or Juvenile Arthritis Event? Yes

son helps organize our local walk

34. During Pregnancy did you take any Medication? yes - tetracycline.

If so what?

35. Was child delivered Natural or by C-Section?? natural

36. How many Hours of Labor? first felt contractions 24 hrs prior; 4 minute

intervals 10 hours prior; actual pushing at 6 cm dilation 20 minutes.

[Non-text portions of this message have been removed]

O'Connor

President

Rail Systems, Inc.

22 North Greenwood Ave.

Hopewell, NJ 08525

609-466-4114

************************<WBR>**Gas prices getting you down? Sear

fuel-efficient used cars.

(_http://autos.http://autos.http://autos.<WBhttp://au_

(http://autos.aol.com/used?ncid=aolaut00050000000007) )

[Non-text portions of this message have been removed]

O'Connor

President

Rail Systems, Inc.

22 North Greenwood Ave.

Hopewell, NJ 08525

609-466-4114

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Name: Isabelle Rose Messner

City & State: Salem VA

Age: 4 years, 5 months

Illness: Pauciarticular JRA

When Did It Start: Jan. 2006

Were There Any Symtoms Prior To Onset: a red-purple rash on thigh,

and two bad viruses in a row including the Parvo 19 virus (aka

Fifth's disease).

Medication On Now: Methrotrexate

What side effects does the child have on medication: none, so far

What color hair does child have: brown

What color eyes: brown

Child Up To Date On Immunizations: No, has medical exemption due to

severe reactions at 6 months (led to seizures, stopped smiling,

stopped making eye contact, hand flapping. began smiling again at 1

year and no more vaccinations).

Has the child had any childhood diseases: no

(Which)

Is your child allergic to any immunization shot: Yes, severe reaction

Is your child allergic to anything: seems to have wheat sensitivity

Has child been exposed to anything or has had:

Flu: no

Chicken Pox: no

Menigitis: no

Add any to this:

Child full term or premature: full term

Weight of child at birth: 7lbs 7oz

Height of child at birth: 21inches

Any complications during birth: Yes, I hemoraged, but she was fine.

What was the stay of the child at the hospital at birth: 3 days

What hospital was child born: town U. Hospital Washington DC

What percentile is the child in height and weight: 90th for height

and 75th for weight.

What age did the child crawl: 10 months

What age did the child walk: 16 months (very late walker)

What age did the child start talking: 1 year she had a few words but

used sign language until age 2 (over 100 signs, cool!)

Did you drink during pregnacy: no

Did you smoke during pregnancy: no

Did you take anything to get pregnant: YES! Infertility medications,

IVF four times, vitamins, for a few years prior.

Did you use birth control: no

(if so what kind) Pill (Triphasil)

Was this a happy pregnancy: It was a MIRACLE pregnancy and I will

never forget the day the nurse called me to tell me we were finally

pregnant. I cried my eyes out with joy!

Which line is this child first born 3rd

Does the child have any more health problems other than JRA? no

( if so please list)

How is the child doing now: Remission for almost a year on

Methotrexate injections weekly.

walking:

Talking:

Motor skills:

Hand eye cooranation:

Family History

Does Grandfather, Grandmother, Father, Mother, Brother, Sister,

Aunts, Uncles

or Cousins have or had any or the following ( put the person who has

it next to it)

Arthritis:

Asthma: baby brother

JRA: aunt, father

Diabetes: grandfather, and great grandmother

Gout:

TB:

Shingles:

Stomach Problems:

ADHD:cousin

Osteroarthritis:father

Eye Problems: grandfather has early stages of glaucoma

Metobolic Problems:

Sickle Cell:

Thrombosis:mother takes blood thinning meds for Protein S deficiency

to prevent blood clots

Heart Trouble:

Emphysema:

Lung Problems:

Kidney Trouble:

Add any if it aint listed:GERD as a baby

Has the child had any broken bones: no

Has the child had any sprains: no

Has the child had any hard bruises: no

Was the child breast fed: yes

Was the child bottle fed: no

If bottle fed what was the formula: Isomil

What age did the child start eating baby food: 6 months

What kind of food did they eat: Earths Best and Gerber organic, all

stages as appropriate

Has the child had ear infections: no

How often: never

Has the child had urinary tract infections: no

How many: none

Has the child had the croup: yes, around time of JRA onset too. Had

a steroid injection because she was nearly unable to breath.

Has the child had any other infections: none

if so what was the antibotic used:

Can you list all medications the child took before onset of symtoms

to JRA: Motrin, Tylenol, saline nose drops

How often was the child seen in a E R before onset of JRA: never

What was diagnosis:

How often was the child seen in the doctors office before onset of

JRA:

approx. 6-8

Was or is the child at any day care centers: no

Is the childs enviroment Big City, Small Town, Rural, or Country:

City

Does the child live near any Factorys, Plants, Airports: a highway!

If so how close: very close, just blocks from DC commuter traffic

Does the child drink City water, Well Water or Bottled water: no,

have a drinking water delivery company.

Does the child eat any packaged meats: yes, stouffers mac and cheese.

Does the child eat canned veggies: no, frozen or fresh

Does the child eat more fried foods: chicken nuggets

Does the child eat more boiled or broiled foods: some

What other foods does the child eat: peanut butter sandwhiches on

wheat bread, yogurt, fruits, granola bars, hot dogs, meat balls,

spaghetti with whole wheat noodles are all her favorites.

Does the child live in Air Condition: yes

Does the Child have Carpet or Hard wood flooring: all wood floors

except for one room with wool carpet.

Electric or Gas stove: gas

Does the child eat foods Microwaved: yes

Now This Is For ALL

What cleaning products do you use in the house: Non-toxic Seventh

Generation, and Method products for last year, but used to use the

regular Pledge, Soft Scrub, etc. products. Wish I could go back in

time and re-do that one...

Have you cleaned your carpets or do you have a company do it: have a

company that uses non-toxic cleaners now.

Has the child been exposed to LEAD or paints with lead in it: no, had

levels tested during toy recalls last year.

Has the child been Exposed to Abestos: no

Does the child take or has taken vitamins: yes, Gummi vites with

folic acid, fish oil for kids, bromelain enzyme, and probiotic blend

How often does the child eat junk foods: once a week she may have

chicken nuggets but otherwise I am " health food nut mom " .

What do you wash the clothes in: Seventh Generation

What kinds of chemicals are around the house: None that I know of...

When you took the child to the doctor for this problem what was the

doctors

reaction: suspected JRA but wanted to send us to an orthopedic

surgeon and do blood tests.

Was the child promptly examined: yes

What did the Doctor say it was the first time: Suprisingly he thought

it was a virus or JRA.

What were the first blood tests given to check: Strep, sed rate,

blood count, ana, rh factor, not sure what all

What is the childs tests now: complete cbc, and liver toxicity

testing every 3 months. So far ANA negative.

What was the childs tests at onset: strep neg, ana neg.

You can give the tests done and the number here onset and now:

How long are the flare ups: none since April of '07

Does weather play a role with flare ups: used to, especially rain

and humidity

How long are the remissions: almost a year now

Do you use self remedys: no

Has your child used or useing a wheelchair: no

Has your child used braces or useing them now: no

What other assistants does your child use: none

What is the pain rate for your child most days: 1 or 2

> ( 1 - 10 10 being worse How is your child in the mornings with

stiffenss: none

Is there a time of day thats worse for your child: no

Does it seem like your child gets sicker more than other kids: no

How long did it take to get a diagnosis: 4 months

Does the Doctor seem compassionate with your concerns: yes, very

Does your child see a physical therapist: yes, she used to for a

contracture in her left knee. She graduated from that last summer

following 6 months of PT.

Does your child see a Occupational Therapist: no

Do you feel you are getting the best treatment for your child: yes

How far do you have to travel for visits to the Rhuemy Doctor: 15

minutes

How far do you travel to see the P T or O T: 30 minutes

How often are each trip: now every 4 months

Do you get questioned from school personel due to school absents:

no, she just goes to a morning preschool, 3 times per week. Starts

Kindergarten in fall of '09.

Do you have a good school staff that understand:

Do you have a school nurse at your childs school:

Do you feel the school is helping you and your child:

Does your child ride a school bus or do you take the child to school:

I take her

How often is the child out of school for Doctor visits:

How often is the child out of school due to illness:

(Explain cold Or JRA ETC... )

How often is child out of school total in a school year:

Does your child participate in P E:

[Guest guest]

1. Weight at Birth? 9lbs 3oz

2. Did the child have Jaundice? yes

3. Was the child Breastfed? yes -

4. If Breastfed how long? 6 months

5. Weeks Gestation at Birth? 42

6. 1st year any Hospital Stay? yes

7. 1st yr any Infections? yes

8. What birth order is child? 5th, 4th living

9. Was child Conceived Natural or by other means? natural

10. What age did Immunizations start? regular schedule

11. Any reactions to any of the Immunization shots? no

12. Has the child had a Blood Transfusion? yes x2

13. What type of work do You and Spouse do? Dad UPS, Mom nurse...now stay at

home

14. Was a Immunization shot given 6 months prior to Symptoms of JA? no

15. If so what age?

16. So you live in the City, Rural, or Suburb? Rural

17. Do you live near a Factory, Chemical, Farm land? Farm Land

18. Did you feed the child Baby Food or made your own at home? both

19. If you fed the child Baby food what brand was it? Gerber/ Heinz

20. If the child ate baby food What variety did the child eat? everything

21. Does a Sibling have any Issues? If so please list. Second oldest child

(18) Epilepsy,OI

22. Does any member of the Family have any Health issues? Type 1 Diabetes

Mom,Crohns Mom, Rheumatoid Arthritis Grandpa

If so list relationship to child and what Health Issues

23. Is child allergic to anything? High Latex,Banana's. Kiwi,

If so please list.

24. How close are you to a Ped. Rhuemy? 45 minutes

25. How long did it take for a Diagnosis? 4 years

26. What State are you in? Iowa

27. Does the Weather make child worse? doesn't seem to matter

28. What Medications does the child take? Prednisone, MTX,Folic

Acid,Celebrex,Sporonox,Nexium,Zyrtec,Pred Forte,Zofran, Intrathecal

Baclofen,Pamidronate Infusions, IVig

29. Does the Medications help? yes,some do. although others are for CP and OI

30. In the last yr How many Flares has the child had? still Very active

arthritis, flares sometimes daily.

31. What type of Juvenile Arthritis does the child have? Systemic JIA

32. Have you ever been to a AJAO Conference? no

33, Have you ever been to a Arthritis Walk or Juvenile Arthritis Event? Not yet

34. During Pregnancy did you take any Medication? insulin (on an insulin pump)

If so what?

35. Was child delivered Natural or by C-Section?? natural

36. How many Hours of Labor? 16 hours

,

Diane and Maggie age 10 (OI,CP,Systemic JIA,UVEITIS,recently diagnosed with

Primary Immunedeficiency...overlapping issues have not gotten a specific name on

that one just yet!)

From: cmjoconnor@... <cmjoconnor@...>

Subject: Re: Survey

Date: Tuesday, June 17, 2008, 8:31 PM

In a message dated 6/17/2008 11:35:19 A.M. Eastern Daylight Time,

carneyvalaol (DOT) com writes:

Ok, Here's a Survey which may help each other see how this group relates.

Hope each takes the survey so others can come to seeing what is similar. All

you have to do is Copy and Paste this to email and send back to the group.

These are questions about the JA child.

1. Weight at Birth? 8 lbs, 7 oz

2. Did the child have Jaundice? no

3. Was the child Breastfed? yes -

4. If Breastfed how long? 10 months

5. Weeks Gestation at Birth? 40

6. 1st year any Hospital Stay? no

7. 1st yr any Infections? no

8. What birth order is child? first

9. Was child Conceived Natural or by other means? natural

10. What age did Immunizations start? regular schedule

11. Any reactions to any of the Immunization shots? no

12. Has the child had a Blood Transfusion? no

13. What type of work do You and Spouse do? consultant rail transportation;

consultant - history / archeology

14. Was a Immunization shot given 6 months prior to Symptoms of JA? no

15. If so what age? n/a

16. So you live in the City, Rural, or Suburb? suburb

17. Do you live near a Factory, Chemical, Farm land? no

18. Did you feed the child Baby Food or made your own at home? baby food

19. If you fed the child Baby food what brand was it? varied

20. If the child ate baby food What variety did the child eat? everything

21. Does a Sibling have any Issues? If so please list. no

22. Does any member of the Family have any Health issues? Psoriasis-mom

If so list relationship to child and what Health Issues.Most N/A - except

for some autoimmune issues in the family

23. Is child allergic to anything? seasonal allergies

If so please list.

24. How close are you to a Ped. Rhuemy? hour

25. How long did it take for a Diagnosis? 2 months

26. What State are you in? new jersey

27. Does the Weather make child worse? haven't observed

28. What Medications does the child take? Methotrexate, folic acid,

29. Does the Medications help? yes

30. In the last yr How many Flares has the child had? 1

31. What type of Juvenile Arthritis does the child have? poly

32. Have you ever been to a AJAO Conference? no

33, Have you ever been to a Arthritis Walk or Juvenile Arthritis Event? Yes

son helps organize our local walk

34. During Pregnancy did you take any Medication? yes - tetracycline.

If so what?

35. Was child delivered Natural or by C-Section?? natural

36. How many Hours of Labor? first felt contractions 24 hrs prior; 4 minute

intervals 10 hours prior; actual pushing at 6 cm dilation 20 minutes.

[Guest guest]

That's probably what I'd do... up to date by your standards!

On Thu, Sep 18, 2008 at 5:10 PM, Petric <bluheron@...> wrote:

> Probably mark YES, and let it

> go....as far as I am concerned they are up to date, NONE is up to date for

> me!

>

>

> Western NY

[Guest guest]

Since that is a gov program it may just be best to mark yes because they could

get social services involved and that is something you don't want to mess with. 

Good Luck!

From: Petric <bluheron@...>

Subject: Survey

Vaccinations

Date: Thursday, September 18, 2008, 11:10 PM

I lost my job and we went to NY's Child Health Plus, and they sent out survey's

to both my children 15 and 12, that I should be filling out but don't know if I

should send back, one of the questions of course was, " Is your child up to dte

with his or her vaccines/shots? Yes No Don't know " Which means if I marked,

" don't know " which I wouldn't, but they would sure look into it and make sure

they were. I don't even want to send it back but that may make them go after me

more, so...Probably mark YES, and let it go....as far as I am concerned they are

up to date, NONE is up to date for me!

Western NY

[Guest guest]

are the survey's required in order for you to get some benefit?

sheri

At 12:10 AM 9/19/2008, you wrote:

>I lost my job and we went to NY's Child Health Plus, and they sent

>out survey's to both my children 15 and 12, that I should be filling

>out but don't know if I should send back, one of the questions of

>course was, " Is your child up to dte with his or her

>vaccines/shots? Yes No Don't know " Which means if I marked,

> " don't know " which I wouldn't, but they would sure look into it and

>make sure they were. I don't even want to send it back but that

>may make them go after me more, so...Probably mark YES, and let it

>go....as far as I am concerned they are up to date, NONE is up to

>date for me!

>

>

>Western NY

[Guest guest]

Can you put N/A?

Winnie

Survey

Vaccinations

> I lost my job and we went to NY's Child Health Plus, and they

> sent out survey's to both my children 15 and 12, that I should

> be filling out but don't know if I should send back, one of the

> questions of course was, " Is your child up to dte with his or

> her vaccines/shots? Yes No Don't know " Which means if I

> marked, " don't know " which I wouldn't, but they would sure look

> into it and make sure they were. I don't even want to send it

> back but that may make them go after me more, so...Probably

> mark YES, and let it go....as far as I am concerned they are up

> to date, NONE is up to date for me!

>

>

> Western NY

>

>

[Guest guest]

I could then they would, scratch their heads and look into it, so will just put

down yes, OR not send it in at all...

then they will look into that too...so....I am wondering....to do or not to

do...

Western NY

Survey

Vaccinations

> I lost my job and we went to NY's Child Health Plus, and they

> sent out survey's to both my children 15 and 12, that I should

> be filling out but don't know if I should send back, one of the

> questions of course was, " Is your child up to dte with his or

> her vaccines/shots? Yes No Don't know " Which means if I

> marked, " don't know " which I wouldn't, but they would sure look

> into it and make sure they were. I don't even want to send it

> back but that may make them go after me more, so...Probably

> mark YES, and let it go....as far as I am concerned they are up

> to date, NONE is up to date for me!

>

>

> Western NY

>

>