Joint Pain In Legs

[Tay Tay's Momma]

My son has had trouble walking for the past couple of months since the onset of symptoms through diagnosis. We have been in the hospital this time since Wednesday with the hopes of steroids and anti inflamitories allowing him to walk home. Still not sure when we are going home, but the doctors here are stumped they are waiting for my pediatrician and GI doctor to return phone calls... The one thing they seem sure of is Taylor (8 years old and active 2 months ago) will not be walking without his walker and we will have many more of these hospital stays to look forward to.

They have done bone scans, blood tests, neurology tests, etc... His ANA levels are normal the only thing that shows up is his joints have hot spots. That could show positive for arthritis, but could also be because he is a kid. I know celiac disease can cause joint and leg pain and juvenile idiopathic arthritis sometimes piggybacks on celiac disease. Any ideas what this could be? Could he have arthritis with a normal ANA?

Sorry to go on and on, but he cried himself to sleep last night with tummy pain and won't walk today because he is afraid it will hurt. He has been incredibly brave through this. I just need to find him some answers...

[Dixiebell]

Is your son positive for celiac?

I hope he gets better soon.

[MacieMay]

Has he had a MRI?

[weluvgators]

We have reactive arthritis issues in one of our children, and I have joint pains with gluten exposure. Tiny amounts (from cross contamination) of gluten seem to aggravate our arthritis issues horribly. We have been treating other issues as well to help us gain some capacity and resilience with less reactivity with arthritic episodes. It is hard! But living super gluten free helps us tremendously. Our child's ANA was negative, as were lots of other tests (tick-borne diseases, nutritional deficiencies . . . I forget the rest). We are still trying to figure it out better, and we have had her in physical and occupational therapy to try and help her. She tends to be "accident" prone (her motor skills and balance can be quite uncoordinated), and it can sometimes be difficult to know if her joint pains are from flares and/or falls sometimes.

This is a really complex problem, and I wish you well as you help your son. Have you gone gluten free to see if it brings him some relief? It is hard for us to balance the pain relief with the further aggravation of the intestine sometimes. For our episodes, we had ultrasounds and MRIs, but it certainly didn't explain *why* . . . our top suspect for now is gluten contamination as the major culprit for us.

[ryebaby0]

My son was dx at 9 with JRA ---insert long story here --- it turned out to be entirely his reaction to raging undiagnosed celiac disease. Once he was gluten free and stable for about 6 months, his joint swelling, pain, etc. (he also had trouble walking, and dropped out of soccer) disappeared completely and has never returned. He is 17 now.

[domesticactivist]

My 10 year old son had joint pain and other pain in his legs and arms for years. This fall he got extreme pain in his right hip and could barely move and was screaming in pain when I moved him. We ended up in the hospital having surgery on his hip (we were in the hospital for 4 days). The drs thought it was either a staff infection or a reactive rheumatoid arthritis to the walking pneumonia he had at the time, although the cultures did not come back positive for staff and other bloodwork didn't appear as they'd expected. However, we did research, eliminated gluten, and his pains went away. I really believe this was due to his gluten consumption. I'm still working out my feelings about no drs suggesting this possibility to me for all the years I brought it up.

[weluvgators]

oh, domesticactivist! That is such a similar experience as we had this past summer, leading for our daughter to have irrigation and debridement of the hip. And we knew we had extensive gluten issues, and we knew that she had been exposed pretty badly leading up to it . . . but she had also been bitten by a tick . . . and it was preceded by horrendous, horrendous hives (no one knew why *that* was part of it) . . . I am still trying to recover from the ordeal, as is my daughter. I am still so angry about so much of it really. And I will never *really* know. And I was so worried that she had a septic hip, and I was so worried about so many things.

My dad talked to his sister who lives in a much larger metropolitan area. It turns out that my cousin knew of a couple of other kids that had the same thing done on their hips that same week under similar conditions (minus the gluten - no idea if the other cases ended with gluten suspects or not).

I guess on the plus side for us, the second hospitilization two weeks later only proved that the first hospitalization was probably NOT for septic arthritis (all cultures were negative) - she went down on the other hip. We still don't know what to make of it all, but we have supported her in taking additional measures to be more gluten free. She has eliminated almost all commercially processed foods, and has not wanted to test much on herself. Our first hip episode was instigated following a much higher than usual amount of "gluten free" processed foods. They simply were not gluten free enough for her to eat on a regular basis. We were "celebrating" the start of summer since she had been so very, very careful all school year in her efforts to relieve her gluten symptoms that began after environmental gluten was introduced at school. We have since surgery treated her for an infection that was found by other doctors - not the ones involved in her hospintalization, and one that was not treated AT ALL by the several antibiotic rounds that we did as spart of the surgery and idiopathic causes routine. I sometimes wonder if those surgical antibiotic rounds only exacerbated an underlying infection that we had been trying to root out for some time prior with no success in conventional routes. This has been such a complex puzzle for us. I hope that your son is healing well following his episode. I have found that we are still dealing with some things caused by surgery that I feel were not adequately addressed by the surgeon and pediatrician. It is really sad to me. My daughter seems to have her share of adhesions that have formed as a result of the operation, and we are trying to help her with that now.

[domesticactivist]

Wow, weluvgators! Your post brought tears to my eyes. I'm so sorry that your daughter's "celebration" turned out so badly and that she even ended up in the hospital the second time. Did they do the same procedure the second time, even though it was obviously a different cause or just aspirate it? How old is your daughter (my son is 10).

I hope people won't mind if I hijack the thread a bit to discuss the surgery. My son had the same procedure as your daughter, but he didn't have problems with adhesions. His pediatric orthopedic surgeon was very experienced, which may have helped. However, he is still having some after-effects (Surgery was at the beginning of September). The surgeon said that he was able to spot and move the main nerve in the area out of the way rather than cut through it, but it is still recovering. He's had burning sensations in his thigh below the incision, numbness, tingling, and pain. They come and go. Now people can touch his thigh, but he has times when even his clothes make it hurt a lot. I'm hoping the nerve damage fully recovers.

I think it makes sense that these huge reactions have happened when there was something else going on as well. The tic bite, the pertussis and pneumonia... they kick the immune system into overdrive, and if it's already there already the results are extreme.

What is the underlying infection you suspect? I wonder if that might apply in my son's case as well.

[weluvgators]

What is the underlying infection you suspect? I wonder if that might apply in my son's case as well.

We identified h. pylori in stool testing.

Our second hospitalization treatment was a 24 hour elimination diet, including a stop of the oral antibiotic that we suspect may have been a potential culprit in the second episode. During this time, our child became so reactive that she hived at the grocery store from the in store bakery. It was so discouraging at times. The after affects that you describe for your son are similar to the complaints our dd has - numbness, tingling, pain at times in the area - often below the scar - odd sensations (my DD is 7 and had surgery in June - went through Physical Therapy after). We are starting to massage regularly now to help with the suspected adhesions. It seems to be the only thing we can do to help her at times. She is feeling better overall, but we still have a ways to go!

[domesticactivist]

I know the hives can be so scary. The first time my son got hives I totally freaked out! I still have no idea what caused it, though we now know his seasonal allergies are intense. He was playing outside in the raspberry bushes where he often played and next thing I knew he had the red spots head to toe. The er dr's laughed at me and gave him benadryl. Thing is, reactions like this can become serious so quickly!