Wondering if anyone can provide me with some help/answers. I have a son who is almost 13 yrs. old who ha been diagnosed with Juvenile Rheumatoid Arthritis(JRA). He was DX when he was very young-probably about 10 yrs. ago when he used to cry in the morning because his knees would hurt and I could feel "heat" coming from his knees, back then it was just pain in the knees in the mornings and the heat-NO SWELLING. So, his Dr. recommended physical therapy which I used to take him to a few times a week, and I believe I used to also give him some type of RX,although I don’t recall which one it was. Anyhow, his condition improved within a year and it NEVER bothered him again, we moved out of state and switched Drs. and I always thought maybe he was misdiagnosed to begin with since there is no definitive test for JRA, and he never had any signs or problems for almost 10 years.
Until recently, since mid 2008 he sometimes complained of his right knee hurting him sometimes, especially in the AM. His last Dr. thought nothing of it, she said it was probably just "growing pains", although I told her about the JRA when he was younger, she said she didn’t think it was that & unless it started to REALLY bother him, I wouldn’t worry about it.
Then, Sept2008 we moved back to NY and in October he started to complain of the pain in his right knee just about every morning,& sometimes at night and even during the day when he was performing physical activities or simple things like walking up/down stairs. I would give him ibuprofen which had no effect & then one day he says to me that he thinks one leg looks bigger than the other, so I look at his right knee & I couldn’t believe my eyes, his rigth knee was EXTREMELY SWOLLEN and puffy-TWICE the size of his left knee, and even the area above the knee (like the thigh area) looked bigger. I immediately got on the phone to call Drs., but I don’t have insurance for him right now and don’t have lots of extra money, although his health is very important so I tried to do all I could do. I got him an appt. the next day at a pediatrician who looked at the leg and I told him about his previous JRA & asked if that is what this was? Like I said before, when he was younger, his knees NEVER got swollen, only pain and heat in both knees in the morning but NEVER swollen. The pediatrician referred me to a pediatric rheumatologist but they told me they couldn’t give me an appt. for 3 months, I felt this was an emergency and couldn’t wait 3 months so I called around to every pediatric rheumatologist I could find & every one either could not give me an appt. that week or gave me the run around since I had no insurance. So, then I started calling regular rheumatologists and found a compassionate one who said I could come in right away. He examined my son & determined that he would need to see a pediatric rheumatologist since the course of treatment is different for children than for adults, he said if my son was 40 yrs. older he would have stuck a needle in his knee and drained the fluid out that was causing swelling, but this was not done to children so he made calls for me to get me an appt. with a pediatric specialist and got me an appt. a few days later (and told me to continue giving ibuprofen-WHICH NEVER HELPED).
So, we see the PR (pediatric rheumatologist) who first orders blood tests to rule out other things (ie: lyme disease & other possible causes). After waiting a week for the test reults, they all came back negative, even his "rheumatoid factor" was negative, but they say that there is no definitive test for JRA and it is diagnosed by a determination of factors and symptoms and not one test alone. Since he had been dx with it when he was younger, and he has a cousin who has it, this is what she determined it to be and she recommended an injection into his knee which was supposed to reduce swelling and relieve the pain, this was supposed to take full effect in about 3 days. During this time now (since October) the PR gave him a note excusing him from playing gym in school until January since he was now haviing bad pains EVERY DAY and the knee was severely swollen and large, he missed school a few times because the pain was so bad in the morning that he could not get up and get ready for school in the morning & in school it hurst him to walk up/down stairs & walk to and from classes.
She also told me to continue giving him ibuprofen (which still never helped). My son has also gained weight, almost 10 lbs. in the last 3 months because he is no longer active at all, he just sits in the house playing games because he no longer likes to play outside with friends (he used tobe very active playing football, riding his bike, etc, etc. etc.). His appt. t have the injection was in November (the earliest appt. they could give me) So, once he got the shot I thought he would be better. Well, he got the injection on a Friday, then on Saturday he said he said ne noticed a slight improv
slight improvement in his pain level. Sunday he said it was a little better, but on Monday he said he was having pain on the other side of his knee, he says the pain used to be mainly on one side (where he got the injection) but now it seems to have moved over to the other side, and the swelling never went down. My son says he feels "fluid" in his knee and it sometimes feels like it is going to burst.
We did not have an appt. to see the Dr. again until about a month after the injection (December), so it had been over two months since we first noticed the swelling, and in all this time, there was no improvement, if anything, it may be getting worse. Also, it is only the right knee, and he does not have any pain or swelling or anything in ANY of his other joints (as many children with JRA have MANY joints affected). I still wonder if it is even JRA, since so far the treatment has not worked and the swelling and pain have not subsided (where from what I read, most people with JR
slight improvement in his pain level. Sunday he said it was a little better, but on Monday he said he was having pain on the other side of his knee, he says the pain used to be mainly on one side (where he got the injection) but now it seems to have moved over to the other side, and the swelling never went down. My son says he feels "fluid" in his knee and it sometimes feels like it is going to burst.
We did not have an appt. to see the Dr. again until about a month after the injection (December), so it had been over two months since we first noticed the swelling, and in all this time, there was no improvement, if anything, it may be getting worse. Also, it is only the right knee, and he does not have any pain or swelling or anything in ANY of his other joints (as many children with JRA have MANY joints affected). I still wonder if it is even JRA, since so far the treatment has not worked and the swelling and pain have not subsided (where from what I read, most people with JR
have flare ups from time to time, but this has been continuous). I should also mention though that when it is a rainy day, his knee hurts EVEN MORE than usual (just as adults with arthritis), on days with bad weather, he has a really bad day.
So, we saw the Dr. for a follow up in December & I explained how he has not improved and he doesn’t want to go to school in the mornings and does not want to be active & isn’t there something else we can be doing to help him? She said he should not be missing any school because of this, that if anything, he should wake up earlier if he needs the extra time to get ready in the morning, and that he should not be sitting around all day, he should exercise and be active to help strengthen the leg (but the problem is that he cries and some mornings can’t even stand in the shower because he says the pain is so bad) and also says he gets embarassed when he is walking up/down the stairs in school and holding on the rail and walking slow because of h
I can’t believe this, I typed out such a lengthy question and it cut half of it out, and my question is all messed up, basically my son is now taking Mobic every day which has not been helping and is very expensive and my questions are to you:
-can anyone recommend anything else?
-does anyone know of any websites where I can learn free physical therapy exercises that I can do at home with my child?
-does anyone think this can be something other than JRA?
-anyone have a similar experience and any advice?
THANK YOU
To Brandy-you recommened a foot specialist, but I’m not sure if you misread, his problem is in his knee, not his ankle or foot, would the foot specialist have anything to do with helping in a problem of the knee? Also, what would a neurologist do? I thought that was for nerve disorders? I just don’t want to bring him to a bunch of Drs. who are not going to be useful since I have to pay out of pocket each time, and this prescription medicine is already costing me now over 0 a month, I want him to get help but don’t want to keep paying people who aren’t really helping, you know?
To Carol H-I am alwasy hesitant about these non FDA approved medicines (I have had no luck in trying various vitamins & supplements for my own ailments in the past), just wondering though-when you suffered with this ailment when you were younger-did the inflammation remain for MONTHS? That is what does not make it seem NORMAL to me and makes me wonder if he was misdiagnosed, I mean, his knee is EXTREMELY HUGE AND SWOLLEN for THREE MONTHS now even with the injection he received, the prescription meds (Mobic), the ibuprofen, etc. etc.-I do have his first PT appointment tomorrow but not sure I can even afford it now, would love to try a sample of that stuff online but dont’ even have a credit card number to give them for the shipping charges, so not sure how I will even do that?