Re: New here-need help for daughter-St. Louis

[Guest guest]

Pam - you might have to drive or fly a distance but Cincinnati has a great

rheumy there. Several of our members go there - not for sure his name. Sound

like she has systemic jra - what is her diagnosis? What meds is she on?

Good luck Sandi Ken Hunter (7 Systemic)

[Guest guest]

Pam:

http://www.rheumatology.org/directory/geo.asp

This web site has a directory to find a ped rheum. Columbia or Kansas City

might have a better match. Call around and see. It is frustrating trying to

find answers and waiting to get in to a ped rheum. I saw there is also 2 other

ped rheum in Saint Louis.

Do you have an cardiologist involved with the heart issues. I would confide with

your family doctor and ped card and insist on your child being reevaluated by

ped rheum or other specialist.

I am in Iowa by Iowa City and it can be 3 - 4 months to get in to the ped rheum

there if you are not an established patient.

Keep asking questions there is some great resources here.

Take Care

Joe 5 systemic JRA

New here-need help for daughter-St. Louis

Hello all,

I have just joined this group. I am trying to find information and get

some help for my 12 year old daughter. Does anyone know of a GOOD

pediatric rheumatologist in the St. Louis area? We have seen one

(associated with a huge children's hospital here--not a very good

rheumatologist I'm afraid,and very lacking in any kind of compassion.)

He basically blew us off because her blood work was " normal " , but my

daughter has been getting sicker and sicker and her knees are so

painful (one of them is swollen) she can hardly walk and she is asking

for crutches. Now she has developed a problem with the pericardium

(surrounding her heart) which I have heard can be associated with jra.

She runs low grade fevers quite often. She is fatigued to the point of

disability. I am getting so desperate to find a good doctor.

Any help,advice, doctor's names, etc would be appreciated!

Thanks so much,

Pam P.

St. Louis, MO

[Guest guest]

Thanks for the reply Sandi. My daughter has, for right now, a " fibromyalgia

like " or " ideopathic pain syndrome " diagnosis. I really think she may have

systemic jra--especially now that I have learned so much about it and she has

the pericarditis now. She has gotten sicker and sicker. We are so worried about

her, and the rheumatologist was terrible. She is only taking ibuprofen.

Thanks so much for the tip about Cincinatti. We would not rule out a trip up

there.

Thanks again,

Pam P.

Missouri

Re: New here-need help for daughter-St. Louis

Pam - you might have to drive or fly a distance but Cincinnati has a great

rheumy there. Several of our members go there - not for sure his name.

Sound

like she has systemic jra - what is her diagnosis? What meds is she on?

Good luck Sandi Ken Hunter (7 Systemic)

[Guest guest]

Thanks so much Becki. I would definitely consider a trip to Cincinatti, if

that's what I need to do. We are so worried about our daughter. She is begging

us for help and is getting very depressed.

Thanks again,

Pam P.

Missouri

Re: New here-need help for daughter-St. Louis

Pam,

We live in Tn and drive 307 miles to Cincinnati.We see Dr.Lovell but I also

recommend Passo and Graham.

Having a great ped rheumy is imperative.We have 2 at Vanderbilt in Nashville

1 hr away but I can't stand either one of them and gets treated crapy.

If you go to the American College of Rheumatoligy website you can get a list

of ped rheumies in each state.

Welcome to the list.

Becki and 7 systemic

[Guest guest]

Hi Pam and welcome to the group. Unfortunately I do not know and Dr's in

St. Louis, but i am sure there are others here that do. Just wanted to say

welcome and ask any questions.

(poly 35)

New here-need help for daughter-St. Louis

Hello all,

I have just joined this group. I am trying to find information and get

some help for my 12 year old daughter. Does anyone know of a GOOD

pediatric rheumatologist in the St. Louis area? We have seen one

(associated with a huge children's hospital here--not a very good

rheumatologist I'm afraid,and very lacking in any kind of compassion.)

He basically blew us off because her blood work was " normal " , but my

daughter has been getting sicker and sicker and her knees are so

painful (one of them is swollen) she can hardly walk and she is asking

for crutches. Now she has developed a problem with the pericardium

(surrounding her heart) which I have heard can be associated with jra.

She runs low grade fevers quite often. She is fatigued to the point of

disability. I am getting so desperate to find a good doctor.

Any help,advice, doctor's names, etc would be appreciated!

Thanks so much,

Pam P.

St. Louis, MO

[Guest guest]

sees Dr Wenkert at Cardinal Glennon Children's Hospital in St

Louis. We have in the past had some scheduling problems with them, as

they only have rheumatology clinics on Thursday afternoons, but I

have no complaints about the doctor.

Misty & (7, systemic)

>

> Hello all,

> I have just joined this group. I am trying to find information and

get

> some help for my 12 year old daughter. Does anyone know of a GOOD

> pediatric rheumatologist in the St. Louis area? We have seen one

> (associated with a huge children's hospital here--not a very good

> rheumatologist I'm afraid,and very lacking in any kind of

compassion.)

> He basically blew us off because her blood work was " normal " , but

my

> daughter has been getting sicker and sicker and her knees are so

> painful (one of them is swollen) she can hardly walk and she is

asking

> for crutches. Now she has developed a problem with the pericardium

> (surrounding her heart) which I have heard can be associated with

jra.

> She runs low grade fevers quite often. She is fatigued to the point

of

> disability. I am getting so desperate to find a good doctor.

> Any help,advice, doctor's names, etc would be appreciated!

> Thanks so much,

> Pam P.

> St. Louis, MO

>

[Guest guest]

Thanks so much . I will check the directory out. I lived in Columbia

several years ago, and I have to say, I liked the medical care better there than

in St. Louis. It's only a 2 hour drive to Columbia.

Pam P.

Missouri

New here-need help for daughter-St. Louis

Hello all,

I have just joined this group. I am trying to find information and get

some help for my 12 year old daughter. Does anyone know of a GOOD

pediatric rheumatologist in the St. Louis area? We have seen one

(associated with a huge children's hospital here--not a very good

rheumatologist I'm afraid,and very lacking in any kind of compassion.)

He basically blew us off because her blood work was " normal " , but my

daughter has been getting sicker and sicker and her knees are so

painful (one of them is swollen) she can hardly walk and she is asking

for crutches. Now she has developed a problem with the pericardium

(surrounding her heart) which I have heard can be associated with jra.

She runs low grade fevers quite often. She is fatigued to the point of

disability. I am getting so desperate to find a good doctor.

Any help,advice, doctor's names, etc would be appreciated!

Thanks so much,

Pam P.

St. Louis, MO

[Guest guest]

Oh, , I forgot to mention when I replied to you, that my daughter's

primary doctor has been talking to a cardiologist about the pericarditis. I will

be talking to him again on Monday. It's possible that he will have a

recommendation for a different ped rheum also.

Thanks so much.

Pam P.

Missouri

New here-need help for daughter-St. Louis

Hello all,

I have just joined this group. I am trying to find information and get

some help for my 12 year old daughter. Does anyone know of a GOOD

pediatric rheumatologist in the St. Louis area? We have seen one

(associated with a huge children's hospital here--not a very good

rheumatologist I'm afraid,and very lacking in any kind of compassion.)

He basically blew us off because her blood work was " normal " , but my

daughter has been getting sicker and sicker and her knees are so

painful (one of them is swollen) she can hardly walk and she is asking

for crutches. Now she has developed a problem with the pericardium

(surrounding her heart) which I have heard can be associated with jra.

She runs low grade fevers quite often. She is fatigued to the point of

disability. I am getting so desperate to find a good doctor.

Any help,advice, doctor's names, etc would be appreciated!

Thanks so much,

Pam P.

St. Louis, MO

[Guest guest]

Hi, Pam. I see that you have already received lots of good advice. I

just wanted to say how great it is that you are not just taking the

first drs word and are trying to get more help for your daughter. You

are so right to question until you get relief for her. The main thing

with these kids is you are trying to get them pain free. It does take a

lot of work sometimes, but every drs goal should be this. The dr should

know that blood work can come back within normal ranges and kids still

are suffering. There is no blood test for JRA. Good luck finding a dr,

and let us know how your daughter is doing, Michele (18, spondy)

New here-need help for daughter-St. Louis

Hello all,

I have just joined this group. I am trying to find information and get

some help for my 12 year old daughter. Does anyone know of a GOOD

pediatric rheumatologist in the St. Louis area? We have seen one

(associated with a huge children's hospital here--not a very good

rheumatologist I'm afraid,and very lacking in any kind of compassion.)

He basically blew us off because her blood work was " normal " , but my

daughter has been getting sicker and sicker and her knees are so

painful (one of them is swollen) she can hardly walk and she is asking

for crutches. Now she has developed a problem with the pericardium

(surrounding her heart) which I have heard can be associated with jra.

She runs low grade fevers quite often. She is fatigued to the point of

disability. I am getting so desperate to find a good doctor.

Any help,advice, doctor's names, etc would be appreciated!

Thanks so much,

Pam P.

St. Louis, MO

[Guest guest]

Thank you SO much Michele! I really appreciate the support. This list has been

such a wonderful, supportive place, and I'm glad to have found it.

It feels so good to have my feelings affirmed and supported in my search for

help for my daughter.

Thanks again!

Pam

New here-need help for daughter-St. Louis

Hello all,

I have just joined this group. I am trying to find information and get

some help for my 12 year old daughter. Does anyone know of a GOOD

pediatric rheumatologist in the St. Louis area? We have seen one

(associated with a huge children's hospital here--not a very good

rheumatologist I'm afraid,and very lacking in any kind of compassion.)

He basically blew us off because her blood work was " normal " , but my

daughter has been getting sicker and sicker and her knees are so

painful (one of them is swollen) she can hardly walk and she is asking

for crutches. Now she has developed a problem with the pericardium

(surrounding her heart) which I have heard can be associated with jra.

She runs low grade fevers quite often. She is fatigued to the point of

disability. I am getting so desperate to find a good doctor.

Any help,advice, doctor's names, etc would be appreciated!

Thanks so much,

Pam P.

St. Louis, MO