what the pediatric rheumy said about g-daughter

[Guest guest]

My daughter and I took the lil one to her first appt with the pediatric

rheumatologist this morning in Louisville.  My daughter wanted me to go b/c I

have Still's.  After the asst doc's eval, the main rheumy came in, they were

really great with Rylee (she's 3 and a half ) but the first questions were

for me, my history and such.  She was shocked (impressed?) that I had the

pericardial effusion.  I told her that we were just erring on the side of

caution with the grand baby, since she has had these episodes of high fever,

knee pain, sore throat (with negative strep cultures) and rash. 

 

She is doing some blood work, of course, and encouraging a journal of symptoms. 

These are all things I had told my daughter would need to be done anyway.  She

said if her ANA was slightly elevated, she wouldn't be surprised with all the

autoimmune in our family.  But if it was very high, she would begin some genetic

testing, as well.  We take her back in 6 wks.  Like I said, they were great with

her (and us) and seemed appropriately concerned. 

 

I had my 3rd spinal epidural last week, got some more relief.  My husband was in

the hospital for a week and they just did a lumbar puncture on him and are

checking his spinal fluid for malignant cells.  Tomorrow we head back to

Louisville for an appt with the liver specialist.  In all this, I have to say I

am doing pretty good myself, seeing my rheumy next week.  I have lost 30 lbs

since Feb (some of that was intentional), then I was hospitalized for issues

with my stomach and couldn't eat much.  Dan tells me I am getting too thin, and

I am.  Life is moving on in our crazy world of docs and tests, hope you all are

doing okay today.

 

BTW, I live in KY and at the time the earthquake hit in Virginia today, our

German Shepherd got low to the ground, ears back and growled.  We then began to

hear about the quake, some said they felt it in Louisville and we were just

there on the 10th floor of the medical building at Norton's, how funny is that? 

Hope everyone is safe!

 

Hugs,

Gail

[Guest guest]

Gail my heart has gone out to Raylee for some time now and I am glad you posted

updates. I'm also very interested if they do the genetic testing. Please let us

know. One of my granddaghter's was born with a genetic condition I guess you

would call it and Ive always wondered if there were any connection but the kids

have never been able to afford the testing for themselves.My heart is with you,

Dan and the family.On the earthquake note. We, here in California, have always

gotten earthquakes and my mom always said to watch your animals they would let

you know exactly as your dog did by hugging the floor and acting differntly when

one was going to hit.Smiles for your day,

From: glmrphy@...

Subject: what the pediatric rheumy said about g-daughter

My daughter and I took the lil one to her first appt with the pediatric

rheumatologist this morning in Louisville. My daughter wanted me to go b/c I

have Still's. After the asst doc's eval, the main rheumy came in, they were

really great with Rylee (she's 3 and a half But if it was very high, she

would begin some genetic testing, as well. We take her back in 6 wks. Like I

said, they were great with her (and us) and seemed appropriately concerned.

BTW, I live in KY and at the time the earthquake hit in Virginia today, our

German Shepherd got low to the ground, ears back and growled.

Hugs,

Gail