Anyone with a child with Juvenile Arthritis?

SGC29

Does anyone here have a small child with Juvenile Arthritis? 

My son is 21 months old and has started showing early signs of JA. We are having a difficult time getting a diagnosis for JA (or if this is something else). He has been complaining of foot pain for over a month now, that has recently progressed to hand and eye complaints. We've been to the pediatrician several times, and the Pediatric Rhuematologist once. The PR did a physical exam and took medical history but said he found no signs of arthritis during the exam (they had my son taking Ibuprofen for a week leading up to the exam though and he did say that could have affected his findings). 

Over the past few days his symptoms have progressed quickly and are so much worse. This morning he was lethargic, would not walk or play. From 7am until 10am he was in and out of sleep and he did not walk until around lunch time. This is not typical for him at all. He is having an extremely difficult time at night and cries out in his sleep in pain. 

I should mention they did blood work, and all came back normal except for his ANA. It was "strongly positive". So we are thinking this is autoimmune and possibly JA, but we still have no answers after two weeks of doctors visits and phone calls. 

Does anyone else have experience with this? I am wondering if we should keep pushing this or if we need to take it slow and see how things progress? We are all so exhausted, and it is becoming increasingly difficult to see our son in such pain. Any experience and advice would be greatly appreciated. I hope it is okay I posted on this board, I have searched high and low for boards online and posted on a few but have received no help yet. 

Thank you.

thetwinkies&Vivi

Does he have any skin issues? Any chance it could be something like psoriatic arthritis?

SGC29

thetwinkies&Vivi said:

Does he have any skin issues? Any chance it could be something like psoriatic arthritis?

He occasionally gets rashes that appear quickly and also do not stay for very long. Other than that no skin issues. We showed photos of two of his rashes to the PR but he really had nothing to say about them. He didn't seem to think they were arthritis related. I've read JA can have rashes so I thought it was a little odd how quick he dismissed them, but I figured he sees this often enough.

SGC29

LovelyRitaMeterMaid said:

Is the ibuprofen working for him for the most part or no?  

Is he also having redness or anything where the pain is?  Nearly all types of arthritis present that way, with red warm or swollen joints because of inflammation.  Maybe if your LO isn't having that and it is just pain, that is why he brushed it off?  I would think they would at least do some x-rays.  He might not look like a typical case of what you are talking about, but he has a positive ANA so obviously something is going on.

After his PR visit, he recommended we back off the ibuprofen so we have. I feel like he may need it though as there was a small improvement when he was taking it.

No red or swollen areas but while at the pediatrician 2 days ago she did find a warm spot in a foot joint that caused him pain when she touched it. She is sending that info to the PR. I'm really hoping he will ask to see him again. We feel very helpless as we wait.

I mentioned to our pedi about X-rays and she said they wouldn't show damage so it wouldn't be helpful. I've read so many stories of patients though who have had xrays. So I'm not sure why they aren't open to that.

SGC29

LovelyRitaMeterMaid said:

Given that he isn't showing the severe signs, the xrays may not show it?  Just guessing.  

I had to study every type of arthritis this semester, so I'm curious!  

That may be why. He is just now at a little over a month of symptoms so maybe there just wouldn't be much to see.

Everything I've read has said this can sometimes be a long process to diagnose. I'm afraid of calling the doctors too often and then not getting the help we need. I want this to be taken seriously because with each passing day it seems like things are progressing. I'm hoping we have some answers soon. So far we just have more questions.

SGC29

wife07mom09 said:

What else did the rheum say? Ana can be positive for many reasons so he needs further work up. I'm
Sorry for your frustration

He really didn't say much which was the confusing part. We left with the same uncertainty we went in with. My family has a strong history of autoimmune diseases so he thought it was possible that he had a positive ANA due to his genes rather than him having an actual AI disease. The problem is he has symptoms. If it were just a positive and no symptoms I wouldn't be as concerned. He sort of just brushed it off.

They (pedi) did other blood work at the time of the ana and all came back ok. I can't remember what all they ran but it was quite a few things.

I'm hoping with his progressing symptoms the rhuematologist will want to do further testing of his own. He didn't seem concerned at our visit, but we are.

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jess9802

Lurker here...

I don't have firsthand experience, but my cousin's daughter was diagnosed with juvenile rheumatoid arthritis shortly before her second birthday. I don't recall whether she had rashes, but she did have swollen joints, had been limping, lethargic, etc., and it took about a month for her pediatricians to sort out the diagnosis. Once the diagnosis was made she made a trip to the children's hospital in our state to be sedated and receive cortisone injections in the affected joints (primarily in her feet, as I recall). The steroid treatment helped the pain but my cousin made jokes about the difficulty of having a toddler on steroids.

Cousin's daughter is nearly 10 years old and receives follow up care but as far as I know hasn't been severely affected by the JRA. At the time of diagnosis there was some speculation that it could be linked to psoriasis, which members of her father's family had, but she did not (and still does not). For the most part she's a pretty typical little girl.

realisticdreams

We have been dealing with extreme leg pain in my 4.5 yo since last August.  She has neuropathy in her feet, complete loss of all reflexes head to toe, and also had to get a wheelchair because her endurance is so limited.  We have seen countless doctors and no one can figure out what it is.

What i'm saying is, a month of trying to figure it out isn't the end of the world, try not to stress, I'm just now going into psycho mom role after 9 months and want.answers.now.

light52

Many autoimmune diseases benefit greatly from a gluten free diet.  I know it is a big change but I would try a dietary change while waiting for an answer.

light52

I didn't say it was a cure, but it can help.  We do not have Celiac but three out of five us are gluten intolerant. 

aa2006

My son was diagnosed with JIA (JRA) in 2013.  He was 21 months old when he started having symptoms and he is now 3 1/2.  It all started with him limping and then he developed a fever and a rash.  They originally thought he had a septic hip and he ended up with close to 7 hip washout surgeries.  When nothing was growing in the cultures and no antibiotics were helping, they realized it was not a septic hip and then were thinking it was HLH (Hemophagocytic Lymphohistiocytosis).  He was treated with 8 weeks of steroids and responded well to the treatment.  However, when he came off of the steroids, all of his symptoms returned.  At that point, we started involving the Rheumatologists.  They did not think it was JIA because there was no evidence of arthritis in his joints, but they recommended a biological medication called Anakinra (Kineret) for us to try.  It is a daily injection.  He has been on that medication since July 2013 and is doing great.  He is 100% symptom free when he is on the medication.  The Rheumatologists finally agree that it is JIA, but just a very strange presentation of it.  They recommend that he stay on the medication for 2 years.  They said that typically children with JIA grow out of it by the time they are adults.  As far as blood tests, there really is no blood test that confirms JIA.  Some of the blood tests that they tracked with my son were C-Reactive Protein, Sed Rate, and Ferritin.  Hope this helps.  Please let me know if you have any other questions.