Uncommon presentation of Crohns?

[WorriedMama00]

My daughter was diagnosed 2 weeks ago with Crohn's after endoscopy and colonoscopy. I've been told her case is interesting because it presented in an uncommon, but not unheard of way. She began with ankle pain swelling, followed by erythema nodosum. Eventually both ankles had inflammation as well as one foot and calf muscle. About 2 weeks later one of her elbows began to hurt and swell. By this time she had large areas of purplish discoloration on the lower half of one shin along with what looked like bruises on the inside and outside of her ankles. About a.month later, she lost her appetite and 20 pounds and became anemic. She doesn't have diarrhea or blood, but does have mouth ulcers. They started her on prednisone after diagnosing her with Crohn's, but after 2 weeks I barely see a difference. The swelling has decreased, but is still present as is the pain along with the erythema nodosum, mouth ulcers, discoloration and stomach pain. She hasn't really even been able to walk for 2 months now. I felt a little relief when we finally got a diagnosis, but am concerned that not much has changed.

Has anyone else had this kind of experience with Crohn's?

 

[Mehita]

Not here personally , but Maya and MLP's kiddos have arthritis issues. Has that been ruled out?

 

[my little penguin]

I would try to get into a rheumotolgists asap
Kids crohns can present with juvenile spondyloarthritis first
This cause issues with the joints typically lower joints
http://www.spondylitis.org/about/juvenile.aspx

DS has this but in his hands and it doesn't follow his GI flares so rare
He is most constipated -rarely has D or blood

 

[WorriedMama00]

She was seen by a rheumatologist that admitted her into the children's hospital in the beginning of March for a week, because he said too much was going on. She was seen and tested by a hospitalist, cardiologist, gastroenterologist, opthamologist and infectious disease doctor all to rule out other diagnosis. Her biopsy from the endoscopy/colonoscopy pointed them toward Crohn's which they say is the cause of everything else. Her C reactive protein and sed rate has been high since January, her hemoglobin was 8 in the hospital and she also has hypoalbuminemia. They started her on iron, prednisone, prilosec and she was supposed to start pentasa, but her insurance won't approve the pentasa and wants them to prescribe something else. She is also supposed to get an MRE, but the insurance hasn't approved that yet either. She followed up with the rheumatologist last week, who said he is now letting the GI lead her case, although he will remain in the background keeping up with her treatment. The specialists all work outpatient at the children's hospital. She goes back to the GI next week, but I'm still worried. She's never been sick like this before and hasn't been in school for 2 months which is starting to get her down. (She is 14)

 

[my little penguin]

Make sure the Rheumo is aware of juvenile Spondyloarthpathy
Not all are aware of it
It's hard to dx
Our rheum thankfully had studied it a lot so was very well versed

 

[Maya142]

My daughters both were diagnosed with juvenile spondyloarthropathy around your daughter's age. My older daughter had swollen painful ankles like you're describing. For her prednisone did work, but only in conjunction with an NSAID (which probably isn't an option for your daughter because of the Crohn's). We also did have do a steroid shot in one of her ankles that remained swollen.

If it is Crohn's related arthritis, it should go away when the Crohn's is under control. However, Pentasa is not a very effective medication for Crohn's, is that all they're planning to put her on?

I agree you need a rheumatologist who really knows and understands juvenile spondyloarthropathy. It might be worth getting a second opinion - I know pediatric rheumatologists are hard to find, but you don't want to risk permanent joint damage.

Even if she doesn't have it, the rheumatologist should still have ideas to make her comfortable - steroid shot, aspirating the joint, physical therapy.
Is she using heat/ice on her ankles? That might help a little.

 

[Farmwife]

Hi and welcome.
I'm so sorry how sick she is.
My daughter was dx with microscopic ibd, juvenile arthritis and Erythema Nodosum.
The Erythema Nodosum (EN) has been so hard on her legs. She also gets it on her ankles but the rheumatologist said it's possible the ones on the joint could be rheumatoid nodules and not EN.
My daughter's arthritis runs independent of her ibd.
Honestly her arthritis and EN are worse than her ibd....... right now.
Please ask as many questions as you like.

 

[WorriedMama00]

Thanks for all the advice! I will have to ask the rheumatologist about the spondyloarthritis. I know he was puzzled because the inflammation is not only in the joints, but also the soft tissue of one of her feet and one of her calf muscles. They did a biopsy of a erythema nodosum nodule including a piece of the muscle underneath. Nothing abnormal other than inflammation. She has to do physical therapy as soon as the swelling goes down which they said should be by next week.

Her legs bother her most. Since she has been on the prednisone, her appetite has gotten better but her stomach hurts a lot especially after eating. I have done research about what foods to eat and what to avoid, but nothing's really helping. They haven't mentioned any other medication other than the pentasa, but she goes on Monday to the GI and I guess we'll find out more.

I'm sorry everyone's kids are going through this illness, but it's nice to have a place where people can relate and give advice. I hadn't even heard of this disease before she was diagnosed and was lost, but I'm glad I found this forum!

 

[my little penguin]

Pentasa is like giving an aspirin for a brain tumor
Not going to hurt much but not going to help much either

Most kids require at least 6-mp or Mtx
Some need biologics
Mtx works well for arthritis as a bonus
We added it to Humira when DS was dx with JSpA this past summer

 

[Maya142]

I know he was puzzled because the inflammation is not only in the joints, but also the soft tissue of one of her feet and one of her calf muscles.

Enthesitis, inflammation where ligaments and tendons insert into the bone, is a VERY common feature of spondyloarthritis. Heel enthesitis is most common but there are plenty of other places that can be affected by it.

Both my girls needed biologics for their arthritis - Humira/Remicade/Simponi.
The other options are NSAIDs which are out for most kiddos with IBD (although my younger daughter has IBD and JSpA and is allowed NSAIDs because the arthritis is so much worse than the IBD) and drugs like Methotrexate.

 

[Clash]

Same here, son was dx'ed with CD and Juvenile Spondyloarthropathy. Even though his CD is controlled right now his JSpA is flaring. He has experienced enthesitis with his JSpA as well.

For a long time we were told his joint pain was Crohns related by a ped rheumatologist and just took that at face value. His joint pain long outlasted a CD flare and a second opinion rheumatologist dx'ed him with Juvenile Spondyloarthropathy a year later. I wish I would've pushed for a second opinion sooner.

 

[Maya142]

Some info for you:

http://peds.stanford.edu/Rotations/red_team/pdfs/JIA/Cassidy-Petty Enthesitis-Related Arthritis.pdf

http://www.wjgnet.com/1007-9327/pdf/v20/i1/45.pdf

 

[Farmwife]

Agree with Maya, my girl has to have a biologic for her arthritis but giving the ibd she really needs it.

Do you know what they saw in the scopes? Inflammation, ulcers or strictures?

 

[WorriedMama00]

This is a lot of information, I will definitely be researching tonight.

The scopes showed inflammation.