Robyn + Kidney pain!

[StevieM]

For the past 3 days Robyn has had a lot of pain in her left kidney :sad: we have spent a fair amount of time at the hospital and so far no one can tell us what is wrong!!

She has no protien, blood or anything else in her urine (dipstick test only) and we are waiting for the lab to let us know if its an infection..... We are also waiting for a call from her nephrologist, but he is at Great Ormond Street Hospital and it usually takes a day or 2 for him to get back to us.

Has anyone else had kidney pain that wasn't due to an infection, or does anyone have any ideas?

Thanks,

Stephanie and Robyn

[bugsy]

Hiya Stevie & Robyn

First of all i want to send great big but gentle hugs :hug: :hug: :hug: to Robyn, i am so sorry to hear that she as so much pain.

I hope that they can find out what is wrong real soon and then they can sort the pain out - poor kid i so feel for her.

Take care - love & :hug: xoxo Auntie Jo xoxo

[Lily]

:sad: Poor Robyn, sending her hugs and loads of sympathy. I hope they sort this out soon Steph.

I've only ever had pain that was specifically kidney related with infection, the tests should reveal that. If the tests dont reveal anything then I would suggest an ultrasound first, then if that turns up nothing an intravenous pylegram (IVP, imagery with x-ray after dye). If she's sensitive to iodine there is another agent they can use and often do these days, I was ok with it too which is a miracle ha! That would uncover any other obvious things like stones or something.

:hugbetter: Robyn & Stef.

Do let us know how she gets along and I hope the specialist has some clue on this.

love
Lily

[hopes_desire]

i agree with lily. an IVP may be the fastest answer if there is no infection. i get stones that block the tubes from the kidneys to the bladder. when the kidneys aren't draining this is very painful. good luck

[StevieM]

Hi all,

Thank you for your replies, advice and general good wishes. Robyn's kidneys are at the moment doing well, the kidney pain ended up being a pulled muscle!! :lol: We have just got back from Great Ormond Street and are sure all is well.......

However, her joints are not as happy...... she has been told that her joints are hypermobile as well as having arthritis, and that is why they hurt so much. This means that we are now getting the occupational therapist in to look at her and determine anything that may help with school.

BUT...the biggest change is they want to start her on methotrexate as well as MMF (cellcept) and we are worried that she gets enough infections as is...... does anyone else take both metho and MMF together and if so how is it? :worried:

Stevie

(P.S. This post is done with full permission of Robyn) :)

[macfamily53]

Dear Steph and robin

I am so glad it was just pull muscle but at the same time i know that is very painfull also.I hope they get the pain under control for robin real soon the poor thing. I do not like all the pain i have and i am sure at 12 it is much harder for her.I just am sending lots of ((((((((((((((((((hugs))))))))))))))for both of you. Take care both of you and let us know how the new meds help with the pain please. Hang in there robyn.

Tammy from chat:) :)

[londonteatime]

Stevie,
At one point, I was taking Plaquenil, mtx, and Cellcept and I didn't have any problems with infections. (I've stopped the mtx because it was causing so much stomach discomfort and making my GERD much worse.)

Honestly, Cellcept has been a huge help and I hope Robyn has similar results! My rashes have gotten much better and I'm rarely having kidney problems these days! Hooray for Cellcept and best wishes to Robyn!

Julie