Re: Aundrea Dermatology visit

[Guest guest]

,

I know how you feel, it seems there are so many unanswered

questions. Are the meds Aundrea's on working? Sadie has been on

Napersyn, Vioxx, Celebrex, some sulfer drug of which none of them

worked. Is Aundrea Rheumtiod Factor and ANA +? Sadie's is not! What

is her blood work showing? As discussed before Sadie blood work

showes elevated sed, muscle and liver enzymes.

Sadie is having the muscle, skin, and tissue biopsy done. I'm glad

that your Dr. is treating without it becuase we are having to wait

another month before it can get done and then he said it could take

up to another month for all the results.

We have backed off the Rheumy in the past because he made us feel

because she was " Atypical " that she didn't have anything wrong or it

was " hypermobility " . Now we sit her on Ibup and Tylenol and extreme

joint pain, but no swelling. It makes me furious that maybe we could

of head all this off if he tried different meds in the past. I guess

it is partly my fault for not having enough faith in the Dr. to

insist he keep trying different stuff.

I have called his office today wanting some kind of meds for Sadie to

help with the joint pain. It is keeping her from sleeping and she

can only make it through a half day of school. I am wondering what

he is going to do.

Jeanine

[Guest guest]

Jeanine,

Are you the one who is in Texas? If so, have you considered going to Texas Children’s to see

one of the pediatric rheumatologists there? You might get more help there than

you are currently getting for Sadie. Another option to consider is the Dallas-

Fort Worth area. I know there are pediatric specialists there as well.

Liz

Re: Aundrea

Dermatology visit

,

I know how you feel, it seems there are so many

unanswered

questions. Are the meds Aundrea's on

working? Sadie has been on

Napersyn, Vioxx, Celebrex, some sulfer drug of

which none of them

worked. Is Aundrea Rheumtiod Factor and ANA

+? Sadie's is not! What

is her blood work showing? As discussed before

Sadie blood work

showes elevated sed, muscle and liver enzymes.

Sadie is having the muscle, skin, and tissue

biopsy done. I'm glad

that your Dr. is treating without it becuase we

are having to wait

another month before it can get done and then he

said it could take

up to another month for all the results.

We have backed off the Rheumy in the past because

he made us feel

because she was " Atypical " that she

didn't have anything wrong or it

was " hypermobility " . Now we sit

her on Ibup and Tylenol and extreme

joint pain, but no swelling. It makes me

furious that maybe we could

of head all this off if he tried different meds in

the past. I guess

it is partly my fault for not having enough faith

in the Dr. to

insist he keep trying different stuff.

I have called his office today wanting some kind

of meds for Sadie to

help with the joint pain. It is keeping her

from sleeping and she

can only make it through a half day of

school. I am wondering what

he is going to do.

Jeanine

[Guest guest]

,

I know the frustration you are going through, trying to get a

diagnosis from someone so proper treatment can get started. We went

3 1/2 years without formal diagnosis. However, I don't think that's

typical to have it go on that long without someone figuring

something out. We went to ped. infectious disease, ped.

gastrointestinal, ped. hematologist, ped. oncologist, ped.

ophthmologist, ped. allergist, and he was already seeing ped. ENT at

the time of first smyptoms. For us, we moved twice during all this

and had all these specialists done in CT, FL, and ID. Each one did

point us back to the ped. rheumys, who wouldn't give formal

diagnosis because we didn't have severe and lasting joint pain,

yet. Ohh how I wish you luck with the drs. The day will come, I

just can't say when for you. I hope it's soon.

Stacia and Hunter,7,systemic,iritis

[Guest guest]

HI :

Glad to hear Aundrea is having a good week.

Enjoy your vacation to Myrtle Beach. I am so jealous:)

Take care.

Patty