Trying to figure out my son's joint pain

[HopefulMom811]

My son has had various joint pain/inflammation since he was 2 yrs old. He is now 12 yrs old. It started in his knees and then his hips. Right now he has had inflammation and pain in his heels and knees. It is very hard for him to be active at anytime of the day. He feels worse by the end of the day when he has been at school. His lower half of his body is also very stiff, very, very tight muscles. He has a different walk because of it. We have been to specialists and have tried many things to help him. Different regiments of anti-inflammatories up to Humira. He stretches, ices and tries to exercise when he can. Nothing is helping him get better. I think we are missing something, but what? Could he be developing Ankylosing Spondylitis?

[grendslori]

I wish you all the best.......

[HopefulMom811]

Thank you for your advice. We are planning on taking getting him in at Mayo Clinic to see if they can come up with a game plan.

[grendslori]

Could it be possible that your son is having a severe reaction or allergy to something he is eating? Steroids are used to suppress the body's immune system, which makes me think it could be something systemic, something that is widespread, yet having a result of attacking his joints. Could he have something like Oshgood-Slaughter Disease? I'm not sure of the exact spelling of this, but it is a joint issue; my own grandson has this problem. Your son could be one of those patients who build up an immunity to the drugs he is taking so they no longer work as well as they should. Steroids are horrible drugs to have to take. My daughter had a heart transplant and she takes Pred as one of the drugs for anti-rejection; that drug also caused her to gain a lot of weight and also caused suicidal thinking in her. The transplant team would lower the dose every six months and by the next time they had to lower it, she was already thinking about killing herself, it would take six months for that drug to give her a reaction like that. I do not envy you for him having to be on steroids! To gain weight at this age, just when the teen years are hitting and looks are everything....and so are sports, both seem to define kids these days which is sad! As I wrote in the previous post: consider going to the Shriner's Children Hospital in Dallas; you need to take him there or to a LARGE University Children's Hospital that deals and sees children that no one else seems to be able to help or know what to do with. That is the STRONGEST piece of advice I can give to you. Your son is hitting one of his most important growing stages; don't wait to do this, you don't want him to progress to a worse state, you want to see someone who can get this under control.  

[HopefulMom811]

Thank for your concern and yes, dealing with the pain and not knowing sounds like the same path we both have travelled. It is the worst thing a parent can go through! The medicine worked but it only worked for a short time. It was as if his body got use to it. Steroids were the only thing that kept the pain and inflammation away. And that made him gain a terrible amount of weight, which now he is dealing with too. We might have to venture out of our box.

[grendslori]

Hello agin. You wrote that he had seen several specialist; I'm expecting that one of them has been a Pediatric Rhuematologist. Havw you considered taking him to Shriners Children's Hospital in Dallas? The care there has been wonderful and the care is free. Your story is very similar to what happened to our daughter. Two weeks after she turned 3 she started complaining about knee pain, the pain would get so bad that we were carrying her everywhere anytime we had to go out. (that really got bad because we were living overseas and didn't have a car!) All of her bloodwork came back normal (which is often times the case in JRA) so her pediatrician sent us to an orthopedist. They did a test on her by putting a dye into her knee joints. He came out telling me that she looked okay and added: "She's not doing this for attention, I can tell you that, if she were doing that, this was her golden opportunety. She laid there and never made a sound." At night she would often times wake up screaming in pain. This went on for two years. On her 5th birthday I took photos of her sitting at the table with her cake and when I got the photos developed, there was one photo that CLEARLY showed the swelling in her hands and wrists. I took that photo to her pediatricain and he got quite a shock telling me that had he seen the photo before, he could have diagnosed her JRA just by the photo alone. She never had a problem with swelling when she was in for her check-ups. During that two years, she was being treated for arthritis, but never had a formal diagnosis of the disease. By the time we returned to the States, she had both knees contracting and it took a year's worth of solid physical therapy to get her knees straightened out again; that was also a painful year! When she walked, she was limping all the time. One thing I want to add here....most pediatricians autoimatically think: Growing Pains. The Rhuematologist told me: "Growing pains affect the long bones of the body, not the joints." Everytime the pediatrician TRIED to convince my daughter, even at three, that the pain she was having was in her legs, she was steadfast insistant that the pain she was having was only in the joint; no matter what they did, what they said, or how they tried to trick her, they could not get her to agree the pain was anywhere other than her knee.
My daughter would run very high temperatures, up to 104. She had problems with fine motor skills first thing in the morning; I remember her teachers telling me that they would have to run her hands under warm water in the morning at school to help her to function better. Does any of this sound fimiliar to you?  I can really feel for what you are going through, there is nothing worse than having a child in pain and not knowing the reason why. I wanted to kiss my daughter's pediatrician when he gave me her diagnosis; he was sitting there feeling like crap (he had grown very attached to her!) telling me and I wanted to scream out in joy! We then knew what the problem was! The fact that your son does better on the drugs, speaks volumes! Obviously he has some kind of inflammatory process going on somewhere, or the drugs would not have had a positive affect on him. Try taking him to Dallas to the Children's hospital there. Take care.    

[HopefulMom811]

They have considered the idea of JRA but he doesn't fit all the criteria of it. They have treated him with the same medicine as if he does have JRA. As soon as he tapers off the meds he gets worse. We have seen a physical therapist and have gotten some good streching moves to do. If he could spend 20 mins a day with a physical therapist I think he would be a different child. Thank you

[grendslori]

Has anyone considered the idea or said anything about him possibly having Juvenile Rhuematoid Arthritis (JRA)? The main thing that might not be accurate would be the stiffness is generally worse in the morning, not after he's been in school. Has a Phyiscal Therapist seen him?

[HopefulMom811]

Thank you, I will.

[trincarib]

check nopela fruit from cactus