We have a diagnosis! (And I'm not crazy!)

[kimmidwife]

Your poor baby! When do you go to Emory? Can you call Dan see if they can get her in sooner? This seems really urgent. They can't leave her suffering like this!

 

[DanceMom]

First biopsy confirmed EN with original Pathologist . Nemours Pathologist thought it could be vasculitis. Second biopsy came back as either EN or vasculitis. Third biopsy came back as EN or hives (definitely isn't hives). Every doctor that has seen it said it definitely looks like EN. Usually it doesn't bother her much but this flare is extremely painful for some reason.

We go to Emory on the 13th. Hopefully if we can get her GI condition under control all else will return to normal.

 

[Maya142]

Sending hugs! Poor kiddo, that sounds painful. Can they give her something for pain, while you are waiting?

Really hope the second opinion helps.

 

[Farmwife]

This flare has not been biopsied, but we've had 3 biopsies in the past. Were Grace's biopsied? I mentioned wearing tights and her expression let me know she wasn't having that.

A ran her 5k and did well, but she's paying for it now. Around 30 EN now, and her rib pain is much worse (like it was in the beginning). I hate to see her like this.

No, never biopsied.
The rheumatologist, dermatologist and gp all agreed it was en.
If grace was like A's, I would get it done.

 

[my little penguin]

Farmwife
Has Grace ever had a skin biopsy
We were told most of the time in auto immune kids the biopsies only show non specific inflammation which is hard to use to Dx anything
The biopsies are deep and takes weeks to heal to just get the stitches out and months to heal afterwards -not to mention scarring
Ds took six months to finally heal and just be a scar
We got lucky and got a Dx off the first biopsy
The Rheumo explained typically that is not the case
If it changes meds or adds scary meds in ds case then it's important to try to know
Or if it's a rare Dx as in ds Sweets syndrome - they need to be sure
But if it's not going to change meds with a confirmed biopsy Dx not sure I would do it again

 

[Farmwife]

No mlp, never biopsied.
Grace's GP is the one who told us that he would wait.
The only time he went against what the others were saying.
I'm glad I listened but if she was like A's I would want to make sure.

 

[DanceMom]

A's first two biopsies were punch biopsies. The dermatologist did the first. Immunologist did the second. Pain was minor and she was tumbling two days later, stitches and all. I was so angry that the second was inconclusive and it took me months to agree to the excisional biopsy. I only agreed because I was desperate to help her. She did it without sedation, had pain for about two weeks, but in the end it didn't make much of a difference. I was then told that skin biopsies are very difficult to read and 5 different pathologists could have 5 different diagnoses from the same biopsy. Not very encouraging. A doesn't care about the scars but I'm angry she went through it.

 

[DanceMom]

It's been a rough week. A's ribs are still the same - swollen and sore. She complained of a sore throat so I took her to the pediatrician only to be told it was a virus (because she didn't have a fever). She then developed a painful inflamed lymph node in her armpit. Throat culture came back today positive for Strep. That only took 5 miserable days. Atlanta next week!

 

[kimmidwife]

Thinking of you guys and hoping you get some answers in Atlanta!!!!