RE: New Mom to list

[Guest guest]

...thanks so much for that advice. I have already begun to be annoyed

with my significant other who says... " Nothing has happened, and we have no

reason to think anything will...why are you so upset! " . My heavens...nothing?

This kid has been miserable for months, and we just learned that it's not

going to go away! Thanks again for the input.

Melinda

[Guest guest]

In a message dated 5/9/01 12:59:02 PM Eastern Daylight Time,

chivalry@... writes:

>

,

Thanks so much for your words. Do you perhaps know where I could find a list

of Board Certified Pediatric Rheumatologists? Or any source where they are

ranked in any way? I am in land, and my pediatrician has referred her to

Hershey Medical, in Hershey PA. However, we are equally close to Washington,

DC and Baltimore, and would be willing to drive as needed for good care.

Thanks again.

Melinda

[Guest guest]

Dear Melinda,

My daughter (Kate!) is 6 1/2 and has had severe polyarticular jra since

age 3. I know how your mind goes into overdrive with that first dx.! I

just want to say my daughter has been through a lot-meds, tests, pain,

surgeries etc.. but I'm only telling you this because I want you to know

she too is also a very natural and gifted athlete. She plays softball

and basketball and is always a coaches favorite (hope that doesn't sound

too snobby lol!) My point is she still continues to play and be a

" normal " kid. She does have times she may move slower or not feel well

but we have learned what limitations she needs. One example is before a

game if she's having a not so good day will have her rest to save her

energy. Or if afterwards she's tired will order something in for dinner

instead of going out to eat. You will learn a lot of " tricks " in coping

with this. Unfortunately it will take time and a day to day basis. If

you would see my Kate on the street you'd never have a clue what she's

dealing with. I know every family is different but our attitude with her

is to let her set her limits-though occasionally we have to step in-and

try to let her be a kid as much as possible. You may have days that

something has to be put off or she may not feel well but overall I think

you'll be amazed at the resilliance these kids have! We too always

worry about Kate having to give up the sports she loves so much-so just

to be on the safe side involve her in other less strenous activities .

Alot of parents will also tell you how good swimming is for these kids.

I'm sorry this is so long and sort of matter of fact-but when Kate was

dx. so many people " blew " it off and gave us comments like " she'll be

fine " etc.. and no one was really honest and straightforward about it.

By all means discuss her activities with her dr. and I'm sure she'll be

able to continue what she enjoys! (have read so many letters from

parents who do have kids in sports-often think we should start our own

team! lol!) Good luck to you both and let us know what her dx. is .

[Guest guest]

Thanks, Liz..I'll look into him.

Melinda

[Guest guest]

Hi, Melinda. I'm sorry to hear about your Kate. As says alot of our

kids are out there playing. I can really relate to how you feel. My son lost

his baseball and volleyball season last year from undiagnosed jra. Now with

the correct diagnosis one year later he is back on the field. Yes he moves

slower and, if you saw my post from the other day, we worry and are a bit

sad over all this. But his determination to play is amazing. Yesterday after

practice he was so glad he was able to " run the hill " with the rest of the

team! Never could have last year. Did he hurt after? Yes, but he was able to

do it. He is learning the limitations his body has, and is working through

them. He gets discouraged but keeps going. I guess I just wanted you to know

that others do understand how you feel. It is almost as if you mourn for the

child that was before, and you learn to help them now. One thing that will

help at the drs is write down what he/she tells you. You'll be amazed at the

info and/or instructions you'll receive at first. It is a bit overwhelming.

Good luck, Michele

New Mom to list

Hi all,

My daughter Kate turned eight on March 30 of this year. After months of

complaining about joint pain, fatigue, sore throat and stomach upset, her

pediatrician finally ordered a more comprehensive batch of tests. 's

blood ANA levels were extraordinarily, apparently off the charts, high. This

leads the doctor to the diagnosis of juvenile rheumatoid arthritis and/or

Lupus. Needless to say, I am reeling right now. She has been referred to a

pediatric rheumatologist for treatment, as her pediatrician feels this is

out

of the scope of their practice. My questions cover the whole spectrum, but

most importantly, I want to know what I NEED to know before I take her to

the

rheumatologist. What information do I take with me, what questions do I ask,

and so forth. I know each child is special, and Kate is no exception. She is

a very gifted athlete, and has broken national records in the long jump, and

nearly met the record for both the sprinting and distance events. She was

also asked to join a prestigious dance performance company just a few months

ago. She is the second of my four children, and somehow it seems that the

child whose lifestyle would be least accepting of this disease is the one

stricken with it. My other children are much less active, and theoretically

would be less hampered by the discomforts that are ruining everything that

means so much to her. Clearly, the quality of her life is the most important

goal to me. I want her to be able to do everything she wants to do. I don't

care about her performance level, she is only a child, but to tell her she

won't be able to do the things she loves would crush her. Any information

about just what to expect here would be extremely appreciated. Thanks so

much.

Melinda

[Guest guest]

Dear Melinda,

You have come to the right place for answers. In many cases you will find more

answers here among fellow parents than you will with the Dr.'s.

.....unfortunately that is perhaps the biggest answer we can give you at this

point. Other answers will only come as you slowly discover the extent of her

affliction and begin to discover what and how much treatment she requires. Be

sure to find a reputable Rheumatologist that is known for treating children.

Generally the most qualified are those who are Board Certified Pediatric

Rheumatologist's, but there are only about 40 in the united states and they are

usually found at major universities.

This condition, JRA, is such a frustrating one, because it evades answers.

Every parent here has floundered with wonder of what their child's future will

be. Ultimately we have all come to discover that our future is written only one

day at a time. With good fortune, medicine and perhaps prayers any child can go

into remission. But this is never a guarantee. Even remission is not a promise

of escape as a relapse is possible. Every case is different and each person

requires special attention and different medications & levels of therapy.

What we can promise you is that this experience will draw you closer to your

child than you have ever imagined for she will need you in so many ways. Being

a parent to a child with JRA has change my life in every way. Now, the most

beautiful thing in my life is when my boy is smiling, playing and laughing. In

a way it is too bad that every parent does not know what we know. That our

children are the most precious gift life can give to us.

I pray your Kate recovers wholly, but if she doesn't know we are here and you

can spend as much time as necessary in our company. Odds are that someone here

has been where you are going and by sharing stories we might be able to save you

some toils and frustration.

God Bless

[ & Skyler]

New Mom to list

Hi all,

My daughter Kate turned eight on March 30 of this year. After months of

complaining about joint pain, fatigue, sore throat and stomach upset, her

pediatrician finally ordered a more comprehensive batch of tests. 's

blood ANA levels were extraordinarily, apparently off the charts, high. This

leads the doctor to the diagnosis of juvenile rheumatoid arthritis and/or

Lupus. Needless to say, I am reeling right now. She has been referred to a

pediatric rheumatologist for treatment, as her pediatrician feels this is out

of the scope of their practice. My questions cover the whole spectrum, but

most importantly, I want to know what I NEED to know before I take her to the

rheumatologist. What information do I take with me, what questions do I ask,

and so forth. I know each child is special, and Kate is no exception. She is

a very gifted athlete, and has broken national records in the long jump, and

nearly met the record for both the sprinting and distance events. She was

also asked to join a prestigious dance performance company just a few months

ago. She is the second of my four children, and somehow it seems that the

child whose lifestyle would be least accepting of this disease is the one

stricken with it. My other children are much less active, and theoretically

would be less hampered by the discomforts that are ruining everything that

means so much to her. Clearly, the quality of her life is the most important

goal to me. I want her to be able to do everything she wants to do. I don't

care about her performance level, she is only a child, but to tell her she

won't be able to do the things she loves would crush her. Any information

about just what to expect here would be extremely appreciated. Thanks so much.

Melinda

[Guest guest]

Melinda,

Welcome to the group. You will find a ton of

information through this group, so pull up a chair. I

love this group and sometimes it is saddening and

overwhelming. I have found that knowledge makes me

feel less helpless. And I would like to share a story

with you about my daughter who is 12 and has

systemic jra.

has always been very active, playing sports,

dancing and always swimming. She stayed very active

during her first two flares. In January she started

her third flare and it was just a matter of weeks

before she had to be in a wheelchair. It was very

hard on everyone, but she is just a trooper. We have

went through many medications, and with some physical

therepy and home exercises, I slowly started making

her walk or should I say limp. We started with short

distances and then I would take her on errands and not

let her use the chair. We of course were under the

doctors supervision always. To make a long story

short, was invited to a birthday party at

the local roller rink last saturday. She wanted to

skate and I let her, biting my lip the whole time.

After the party we iced her legs and I was seriously

concerned about how she would feel the next day. She

felt fine, didn't even limp and now I am pulling out

her skates and bicycle.

Her flare is far from being under control, but there

is so much they can do for our children now. I just

wanted to cry when I saw her skating again, it was

such a beautiful sight. And It was just a month or so

ago I was crying because I didn't know if she would

ever be able to do these things again. Sometimes I

dont think I am strong enough to handle all the ups

and downs of this disease and I secretely cry myself

to sleep when it gets to be to much, but then I awake

with some new found strength and I am ready to tackle

the next challenge.

My prayers are with your family,

I hope tomorrow is a brighter day,

Suzie

--- Mmyersetal@... wrote:

> Hi all,

> My daughter Kate turned eight on March 30 of this

> year. After months of

> complaining about joint pain, fatigue, sore throat

> and stomach upset, her

> pediatrician finally ordered a more comprehensive

> batch of tests. 's

> blood ANA levels were extraordinarily, apparently

> off the charts, high. This

> leads the doctor to the diagnosis of juvenile

> rheumatoid arthritis and/or

> Lupus. Needless to say, I am reeling right now. She

> has been referred to a

> pediatric rheumatologist for treatment, as her

> pediatrician feels this is out

> of the scope of their practice. My questions cover

> the whole spectrum, but

> most importantly, I want to know what I NEED to know

> before I take her to the

> rheumatologist. What information do I take with me,

> what questions do I ask,

> and so forth. I know each child is special, and Kate

> is no exception. She is

> a very gifted athlete, and has broken national

> records in the long jump, and

> nearly met the record for both the sprinting and

> distance events. She was

> also asked to join a prestigious dance performance

> company just a few months

> ago. She is the second of my four children, and

> somehow it seems that the

> child whose lifestyle would be least accepting of

> this disease is the one

> stricken with it. My other children are much less

> active, and theoretically

> would be less hampered by the discomforts that are

> ruining everything that

> means so much to her. Clearly, the quality of her

> life is the most important

> goal to me. I want her to be able to do everything

> she wants to do. I don't

> care about her performance level, she is only a

> child, but to tell her she

> won't be able to do the things she loves would crush

> her. Any information

> about just what to expect here would be extremely

> appreciated. Thanks so much.

>

> Melinda

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Thanks for the info!

Melinda

[Guest guest]

Melinda,

We are in Virginia and see Lipnick in Bethesda, MD. He is in private

practice and takes nearly every insurance. He also has an office in Ellicott

City, MD. He has been my daughter's rheumatologist for over 6 years now and

we think the world of him.. If you would like more info let me know.

Liz

Re: New Mom to list

> In a message dated 5/9/01 12:59:02 PM Eastern Daylight Time,

> chivalry@... writes:

>

>

> >

>

> ,

> Thanks so much for your words. Do you perhaps know where I could find a

list

> of Board Certified Pediatric Rheumatologists? Or any source where they are

> ranked in any way? I am in land, and my pediatrician has referred her

to

> Hershey Medical, in Hershey PA. However, we are equally close to

Washington,

> DC and Baltimore, and would be willing to drive as needed for good care.

> Thanks again.

>

> Melinda

>

>

>

[Guest guest]

Melinda,

Don't be too reserved on the Board certification. It is a good idea, yet there

are still very many good and qualified Rheumatologists that treat pediatric

cases. We had to move up to a Board certified Dr. when my sons case became so

severe that our original Dr. (who is very reputable) claimed he had no further

treatments. He actually instructed us to seek out a certified Dr.

I do not know of a specific list, but I think that someone here does as we

chatted about it several months ago.

~ [ & Skyler]

Re: New Mom to list

In a message dated 5/9/01 12:59:02 PM Eastern Daylight Time,

chivalry@... writes:

>

,

Thanks so much for your words. Do you perhaps know where I could find a list

of Board Certified Pediatric Rheumatologists? Or any source where they are

ranked in any way? I am in land, and my pediatrician has referred her to

Hershey Medical, in Hershey PA. However, we are equally close to Washington,

DC and Baltimore, and would be willing to drive as needed for good care.

Thanks again.

Melinda

[Guest guest]

Thank you for that. I need all the positive stories I can get. I feel so new

to this, so unaware of what will happen. It is good to hear from those " in

the trenches " so to speak.

Melinda

[Guest guest]

Melinda,

My daughter, Colleen, turned 6 last March. She was diagnosed on her

birthday one year ago with systemic JRA. We are in N E land and

see Dr. in Ellicott City. He has been wonderful to

us, easy to talk to and Colleen really likes him. I believe there is

another excellent Ped. Rhum. down at Hopkins, though I don't know his

name. Take care...keep your chin up...Sue.

[Guest guest]

Thanks for your welcome!

It's been really fun reading your comments; it feels like you live in this

group! I wish I had your determination, working on it hard, though! I find it

harder and harder to keep my mouth shut.

Annette

>

> Welocme, Annette! How nice for you that both you and your husband are in

agreement about vaccines. I'm glad to hear you decided not to vax at all from

the start. I wish I'd been so smart.

>

> Winnie

>

> New mom to list

> Vaccinations

>

> > After Sheri's message, I decided to finally introduce myself, too.

> > I've been listening in for a few months now, and really enjoyed

> > reading the different messages. Thank you for sharing so much.

> >

> > My name is Annette, Dutch mother of a non-vaccinated 7 month old boy.

> > I live in the Netherlands (Europe), where we found out it's very

> > easy to not vaccinate. I'm a chiropractor, so the issue of

> > vaccination was introduced to me during my studies.

> > My American husband (also a chiropractor, so no vaccination

> > discussions in our home, how wonderful!) and I lived in

> > Guatemala for 3 years, and treated brain-injured kids in a

> > school setting that followed the Doman method, and got to see

> > lots of injured kids first hand. Several were injured due to

> > vaccinations, but others because of birthing difficulties,

> > anesthesia or drug reactions.

> > On our well-baby checkup when our son was due for his first

> > vaccines, he was crying a bit. The assistent said: " well, I

> > guess he knows he's getting his first shots today " . To which my

> > husband anwered: " he's not! " That was the extend of the

> > conversation. The doctor has never brought the topic back in

> > conversation. We think it's a blessing not to live in the USA

> > vaccination-wise.

> > I do not know whether vaccination is required for school

> > enrollment, but won't have to think about that for another few years.

> >

> >

> >

>

>

>

[Guest guest]

Welcome Annette.

Very glad you have joined the group. As you can see, there are a lot of chiro

pts here! LOL!

So glad you and husband are in agreement - it must be very difficult for couples

who are not.

Mara

From: Annette Dannenberg <naburke@...>

Subject: New mom to list

Vaccinations

Date: Thursday, July 9, 2009, 7:47 AM

After Sheri's message, I decided to finally introduce myself, too.

I've been listening in for a few months now, and really enjoyed reading the

different messages. Thank you for sharing so much.

My name is Annette, Dutch mother of a non-vaccinated 7 month old boy.

I live in the Netherlands (Europe), where we found out it's very easy to not

vaccinate. I'm a chiropractor, so the issue of vaccination was introduced to me

during my studies.

My American husband (also a chiropractor, so no vaccination discussions in our

home, how wonderful!) and I lived in Guatemala for 3 years, and treated

brain-injured kids in a school setting that followed the Doman method, and got

to see lots of injured kids first hand. Several were injured due to

vaccinations, but others because of birthing difficulties, anesthesia or drug

reactions.

On our well-baby checkup when our son was due for his first vaccines, he was

crying a bit. The assistent said: " well, I guess he knows he's getting his first

shots today " . To which my husband anwered: " he's not! " That was the extend of

the conversation. The doctor has never brought the topic back in conversation.

We think it's a blessing not to live in the USA vaccination-wise.

I do not know whether vaccination is required for school enrollment, but won't

have to think about that for another few years.

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

[Guest guest]

Oh, don't feel you need to keep your mouth shut. There are a lot of people out

there who need to hear what you're thinking. They might be thinking the same

thing, too!

Winnie

New mom to list

> > Vaccinations

> >

> > > After Sheri's message, I decided to finally introduce

> myself, too.

> > > I've been listening in for a few months now, and really

> enjoyed

> > > reading the different messages. Thank you for sharing so much.

> > >

> > > My name is Annette, Dutch mother of a non-vaccinated 7 month

> old boy.

> > > I live in the Netherlands (Europe), where we found out it's

> very

> > > easy to not vaccinate. I'm a chiropractor, so the issue of

> > > vaccination was introduced to me during my studies.

> > > My American husband (also a chiropractor, so no vaccination

> > > discussions in our home, how wonderful!) and I lived in

> > > Guatemala for 3 years, and treated brain-injured kids in a

> > > school setting that followed the Doman method, and got to

> see

> > > lots of injured kids first hand. Several were injured due to

> > > vaccinations, but others because of birthing difficulties,

> > > anesthesia or drug reactions.

> > > On our well-baby checkup when our son was due for his first

> > > vaccines, he was crying a bit. The assistent said: " well, I

> > > guess he knows he's getting his first shots today " . To which

> my

> > > husband anwered: " he's not! " That was the extend of the

> > > conversation. The doctor has never brought the topic back in

> > > conversation. We think it's a blessing not to live in the

> USA

> > > vaccination-wise.

> > > I do not know whether vaccination is required for school

> > > enrollment, but won't have to think about that for another

> few years.

> > >

> > >

> > >

> >

> >

> >