your thoughts...sorry this is so long

[Guest guest]

Hey everyone,

I just want to tell you all that you and your families are in my

prayers daily. I do not post on here very often, but I read the posts

in my email daily. I feel as though I know you all and value all your

opinioins.

I apologize beforehand but this is going to be a LONG post. I have to

tell you about myself and my daughters for my question to make sense.

Here is a little about me. I am 35 years old and was diagnosed with

Mixed Connective Tissue Disease/Lupus in 2004 when I was 30 years

old. I had recently had surgery. It started with my joints swelling

up, but looking back now me and my mom are almost positive I had

issues growing up. I was always a sickly child and always very achy.

Then in 2005 I was diagnosed with IBS and in 2006 I was diagnosed

with Fibromyalgia. I have elevated liver enzymes so they can't give

me many of the traditional meds and I have to take a daily prednisone

pill. =(

Then there is my 15 year old daughter that was also a very sickly and

achy child. She didn't start walking until she was 18 months. She

always had strep and then at age 5 she started complaining of her

wrists and fingers hurting. I took her to the doctor all the time and

they just dismissed it. Then they thought she had Crohn's Disease at

age of 7 (her biological dad had severe crohn's and died of

complications in 2005). We did so many x-rays of her wrists and

fingers, but they always came back " fine " . Then I changed jobs in

2006 and had to change pediatricians. I transfered all her medical

records and talked to them about her aches and pains. They did blood

work and she had and elevated rheumatoid factor. We were sent to the

rheumatologist. Our first visit he wasn't sure she had any problems,

but 2 weeks later she had a major flare and she was diagnosed with

JRA. Unfortunately the meds don't seem to be working. She started on

naproxen and quickly added methotrexate. Then one to remicade but it

stopped working. We moved on to Humira...she was allergic. Then on to

Enbrel...she was allergic. She stopped the methotrexate and they

started us on Arava. She started flaring so they added prednisone and

she is still flaring. So I'm not sure what our next step will be.

Finally there is my 12 year old daughter with severe ADHD and

tourette's syndrome. She is the real reason I am writing here today.

She started getting bad pains in her side and back at the end of

September. We ended up in the ER on 4 different occasions. They kept

telling us it was indigestion. I knew better. The third time I took

her to a different hospital and they did a CT scan looking for gall

stones. There was no evidence and her blood work was good. They said

to follow up with the pediatrician. So the next morning we went to

the ped. and got a referral to the ped. gastro. and went home. That

night we were back in the er with the same pains. They did blood work

again and did an ultrasound of her gall bladder. She had gall

stones...3 large ones and a bunch of sludge, but they were afraid a

stone had gotten into her bile duct and was causing all the pain.

They transferred her to Dell Children's Hospital by ambulance. She

had surgery the next day (Thursday) to get the stone out of her bile

duct and then Friday she had her gall bladder removed. She did good,

but was in a little pain. She was on morphine in the hospital and

when we went home they gave us a script for hydracodine. She took

that for 2 1/2 days then she didn't need it anymore. She stayed home

from school Monday, but wanted to go on Tuesday. She came home with a

rash all over her body. It was red, hot, and itched her like crazy. I

took her to the doctor and they said they didn't know what caused it

cause if she was allergic to the pain meds she should have gotten the

rash when she was taking them not after she stopped. They put her on

prednisone and the rash was gone in a day or two. Since then she has

been complaining a lot of aching joints. I took her in to the

pediatrician and they did blood work...her ANA is elevated. That is

the same thing that was elevated in my blood when they referred me to

the rheumatologist and I got my original diagnosis. I was thinking

about this today and remembered I got sick after having surgery too.

What do you all think the odds are of her having an auto-immune

disorder as well? Could the rash have been a flare? My other daughter

didn't have rashes that I can recall but after looking at some of the

pictures on this site I realized that is what my daughters looked

like. When your children get rashes do they itch? Does anyone have

any advice as to what to tell the rehumy cause he has always told me

it would be very rare for them both to be sick. I had questioned him

about this almost a year ago cause my daughter kept getting a swollen

knee and ankle. He noticed the swelling when she went with us to her

sisters appointment but assured me it would be rare for them both to

be sick. Any thoughts or advice.

And again I'm sorry for such a long message.

Hugs to you all,

(mom to 15, Poly JIA, asthma, chronic hives, IBS,

back problems and Jayna 12, ADHD, tourette's syndrome, OCD, possibly

Lupus)