Re: finally sending my g-daughter to rheumy

[Guest guest]

Gail, please make sure that your granddaughter is going to a PEDIATRIC board

certified rheumatologist. I am not sure if that hospital has one. Some

children's hospitals will try to pass themselves off as having one, but in

truth, they are not board certified. A physician goes to medical school, does a

residency in pediatrics to become a pediatrician, does a three year fellowship

at a teaching hospital which has a program in pediatric rheumatology, and then

takes the boards to become board certified.

My daughter has had systemic jra for the last 12 years, and I run a support

group for the families and children with jra in Oregon and SW Washington. I kind

of have my finger on the pulse of systemic care in the nation.

Cincinnati Children's Hospital is the mecca for jra in the U.S. You want the

absolute best for your granddaughter if she does have systemic jra. Isn't

Cincinnati fairly close to Louisville? There are 12 states in our nation that

don't have a ped rheumy and many parents drive very far to see a specialist.

Please feel free to contact me if you have any questions regarding jra care.

[Guest guest]

Yes, , he is a Board Certified Pediatric Rheumatologist.  We have checked

his credentials and spoken with another set of parents who have taken their

daughter to him.  My husband went to the children's hospital in Cincy when he

was a little boy, it's wonderful there, too, so will keep that in mind.

 

Thanks,

Gail

 

Gail, please make sure that your granddaughter is going to a PEDIATRIC board

certified rheumatologist.

[Guest guest]

Gail,It's ok to post what's happening with our families because that is what

affects our illness. We only wish the best for your granddaughter, is her name

Rylee? and you of course.Please continue to update us as to how your family is

doing.Many wishes for better times,

From: glmrphy@...

Subject: finally sending my g-daughter to rheumy

My daughter took the lil one back to her pediatrician this morning after

another night of fevers. So, he said it was time to call the pediatric

rheumatologist. Meantime, i go for my 2nd spinal epidural next thurs. Thanks

for listening and I hope it's not a problem for me to talk about my sweet lil

baby grand daughter... Thanks for listening, love ya'll and hope everyone has a

blessed day.

Hugs,

Gail (KY)

[Guest guest]

Hello Gail,

I do not know how much fluid you received by IV at your last ESI. This time

make sure they start a #18 gauge needle with your IV and give you a liter of

normal saline at a reasonable rate per hour (greater than 125cc/hr providing no

pre-existing heart disease). If you get an ESI in the AM you will be relatively

dehydrated and a vaso-vagal reaction will be more severe. I am not sure what the

Valium has to do with modifying the firing of para-sympathetic nerves but with

more fluid on board if the reaction occurs it should be less severe.

Harry S.

To: stillsdisease

From: glmrphy@...

Date: Thu, 30 Jun 2011 12:05:00 -0700

Subject: finally sending my g-daughter to rheumy

My daughter took the lil one back to her pediatrician this morning after

another night of fevers. They checked her throat (very red and swollen) for

strep- negative. Checked her urine again-negative. (I should mention that this

all has been done on 2 other occasions as well) She has complained about

shoulder pain and had a faint rash and has also lost another 1/2 pound. A lot

considering she is only 28 lbs and already on the low end of the weight scale.

(Some of her clothes are still size 18 mos but she is over 3 yrs old)

So, he said it was time to call the pediatric rheumatologist. She will be going

to one at Kosair Children's Hospital in Louisville. Meantime, he did not want

to try antibiotics again since they don't help and he said to continue

monitoring her, keeping a journal of times of fevers & symptoms and treating her

fevers with tylenol and motrin until she is seen there.

Meantime, i go for my 2nd spinal epidural next thurs. Called the doc to ask if

there was something they could give me to prevent that Vaso Vagal nerve reaction

I had, so he is calling in a single dose of Valium for me to take an hour before

my appt. But the first injection has helped me so much, I believe that I would

do it even knowing that reaction would happen again.

Thanks for listening and I hope it's not a problem for me to talk about my sweet

lil baby grand daughter... hoping they can find that it's something less

serious, but she has had a history of fevers out of nowhere and rashes that come

and go. And every time, they are not able to find any type of infection.

Thanks for listening, love ya'll and hope everyone has a blessed day.

Hugs,

Gail (KY)