[shmom]

I am new to all this - I need some advice & support. My 13yo has been sick for about 6 mos.
Oct - Hives all over swollen hands, feet, allergist tests all negative
Dec - Chest pain dx costochondritis, chronic headaches, joint pain.
Jan - #1 Rhemy says fibromyalgia after 30 min.interview, orders bone scan, ultrasound adominal. Ovarian Cyst 5.5 cm, finally ruptured, chronic headache, chest pain still. Blood Work normal.
Feb - swelling in knee & pain, chronic headache, chest pain, swollen feet
Mar - knee pain swollen, red then purple, foot pain, chronic headache, chest pain Slightly elevated ESR, liver enyzmes elevated slightly. New rhemy dx connective tissue disease on 2nd visit. Plaquenil, relafan, cymbalta.
My daughter has gotten worse since last visit. Cannot walk or put weight on feet due to pain.
We go to dr today and he pulls me aside and says she should be able to walk.
I know my daughter I do not believe this is in her head - she will walk again right now she is in too much pain. So he tells her she can walk and she will not leave the exam room unless she walks out. (I am encouraging her to walk even though my brain knows better) She starts crying and I am completely confused - I know my daughter better than this dr that has spent less than 1 hour with her. He left the room and then I left her crying on the exam table (boy am I stupid!) I go out to the waiting room and call her therapist and tell her what happened and she told me to leave that office and don't ever go back. I am soo confused. I thought we were working on a plan to help make her better now that this doc has done a 360 I don't know where to turn.

 

[Maia]

I'm glad you have that therapist to back you up on your gut feeling that your daughter is just in too much pain to walk. I cannot believe the rheumatologist behaved that way towards your daughter! Are you in a big city? I hope you have other rheumatologists to consult with that are nearby.

What is her pediatrician like? What things have been ruled out already? I would request copies of her blood tests and have them ready to take with you to her next doctor appointment; then less time will be wasted getting him/her up to speed.

I personally have not ever been in that kind of pain that I couldn't walk, and probably most people with lupus would say that too. But to discount the possibility after just 2 visits... seems quite asinine to me! You know your daughter, she already has a therapist who would be quite capable of determining if there is some non-physical reason she can't/won't walk, you keep going on and on until you find a doctor willing to treat her appropriately and stay within his/her realm of expertise. Which clearly this last doctor didn't do.

 

[greenhaggis]

SHMON, what a horiible ordeal! It does sound like you need to seek alternative specialist/doctor. My love and thoughts are with you both!

Based on how I see my kids handle pain I do believe children are less willing to suffer with the pain as we do as adults. This does not mean that your daughter is not in immense pain, but honestly why would she want to feel that pain every time she tries to put pressure on her feet! Have you tried massaging the feet or putting a analgesic cream directly on them (obviuosly check with Pharamsist re. cream) to help releive the pain! I would think its important for your daughter to try to stimulate and move feet so that muscles do not get tight - can she do this with help whilst sitting down.

Let us know how things go!

Love and hugs Lesley

 

[Katharine]

Hello,

I agree with the therapist. You definitely need another doc! That kind of attitude is totally unacceptable for anyone - but for a child !!!!

I once met a doctor like that. She has decided that all my problems were due to a lack of sport (I used to work with horses, riding 6 or 7 a day, I walked a lot and did aikido twice a week) and an old back injury (the only place I wasn't hurting was my back).

I am very glad to say that our paths have never crossed again and I have never hesitated to say what I thought about her if asked. On the day I saw her I was so tired from long term lack of sleep that I didn't react. I now know that if it happened again, I would just walk out.

I would definitely get back to your GP for another referral. That appointment was worse than useless and if your daughter is in that much pain she needs help fast!

Katharine

 

[helloos]

As you said you know your daughter better than this clown.

I would find another doctor as well.

 

[halfpintfl]

Hi there, That Rheumy needs to be taken out behind the barn, ya know what I mean? I do identify with the feeling
that your daughter describes about her feet. I have Fibro along with my Lupus, and when the Fibro acts up, it's like
walking on broken hot chips of glass to put my feet on the ground. I would ask your GP for a referral to see a different
Rheumy, and ask if you can get your daughter in f-a-s-t.
I wish you all the luck possible, and let us know how things are going. We are here for you, and that preceious daughter.:wink2: ​