Arthritis - Juvenile Support Group

This will be kind of long. We have been on a very long road for the past 4 most. So, please bear with me, and LMK if any of it sounds familiar.

In Jan, my daughter was having shocking episodes all day, and then her hip was in such pain she was limping. We see the dr on Fri for xrays, normal. During the weekend, all of her joints on the right side were in such pain, she wouldn't bend her elbow. The pain was in her jaw (near a dog bite from 4 mos previous), shoulder, elbow, hip, knee, ankle. She also got pain in her ribs at times. She took baths, and it was better. Dr on Monday, and he does a test that shows she is positive for strep, but we cannot figure out when she got this, unless it came from the dog bite. Possible, but we can't be sure she wasn't exposed any other time. However, none of the other 8 members of the family got the strep before or after she was Dx. They put her her on 2 ABx for it, as she still tested positive after 1st. She had daily pain, and limped for 5 weeks. Only 6 days during the 1st ABx, was she pain free. She had eye pain and headaches, so I took her to the optha eye doc before rheumy and her eyes are fine.

At 6 wks, the dr referred us to a rheumy, JIC it was turning JRA. 9days before the appt, she was REALLY bad off, and dr put her on Aleve full time until rheumy appt. She was pretty good at the 1st appt, and we were told to come back during a flare. And, given liquid Aleve, because she can't swallow pills or anything gross, BAD gag reflex, dental work is a bear. Only Ibuprofen helps a little, Aleve does nothing. So, 6 days later, she is in the worst flare ever, and cannot walk more than 2-10 steps at a time. But, the rheumy says that there is no evidence of arthritis at all, and it is neuro pain. Her range of motion was ok, but weight bearing is unbearable (sorry for pun). Her mornings are worse. If she's been active, PM she may have soreness. A cold made her worse. Rollerskating seems to have made her flare again, when she had had the best (but not perfect)2 wks since this started. He gave her Tylenol 3 for the pain, and it just made her unable to walk at all the next morning, the pain was so bad. Since not using it, she hasn't been that bad, and she hadn't been that bad since that flare. Her extremities went red and hot 2 evenings and back to normal (one after a bath, one not), and the next, she itched all over. She hasn't had that since we took her off the Aleve.

She has had 4 blood tests, all normal but one. Add later about that. Xrays on hips, knees, feet (because toes are odd), and back, all normal. Urinalysis normal.

So, he said that there was no evidence of arthritis, reactive or JRA or Lyme (test was neg). Which means those 3 mos were believing it was arthritis, and it may or may not go away. If it is neuro, we don't know what we are looking at, and if it will go away. Since then, she has had her leg go numb twice for 30-70 min. She had dizziness two nights, and one day until noon, she couldn't get off couch. She had brief episodes during the day and walked through it, but I could tell.

She also got this rash on her chin again. Around the start, she had a V shaped dark rash on her chin that lasted 2 days, this time it is a large L.

The rheumy had told me that JRA doesn't just come and go, that it is constant pain. After I told him she had been in constant pain but 10 out of 90 days, but it gets better and worse. Each flare seemed to be shorter but more severe. Now, it is her ankles, back, or legs that bother her most.

They just told me 3 weeks after the Lyme draw that she was positive for Rocky Mountain Spotted Fever (rash seems to look like this type, but on face, and usually not on face or this small). But, that is an acute illness that we cannot trace back on her at all. That is something extremely serious, and even though she did get a "summer" flu 3 weeks after the dog bite, so did everyone else. Her last illness before the hip pain was 5 weeks before when everyone had the flu for 24 hrs. Nothing that seemed like strep, or RMSF for goodness sake! The dr believes it was a mistake, and with a pos, they had to redo it anyway. If it is pos, it was a past illness. So, we will find out about that, while we still wait on the neuro appt.

So, I may not be in the right place, but I had been on a JRA group for a couple months, because of her pain and symptoms. I was CONVINCED it must be the answer. And, now these "neuro" symptoms did pop up, but she doesn't know what is or isn't a symptom. So, I am on the MS group too, as it sounded much like that but I thought it wasn't since she hadn't had the dizziness or numbness. She told me, I never asked her. I don't want anything to become psychosomatic.

Our ped was going to do an MRI on her back if it was a pinched nerve, but I asked if he could do her head and neck too, and he wanted to refer us to the neuro instead. I was really thinking it was MS, although I know that in a child it is rare, but now the rash again. So, it doesn't make sense. If this is lupus, wouldn't there still be evidence of arthritis when in a flare? Another reason I joined this group, is because I wonder if it is lupus, and that is JRA related.

So, can anyone help us? I really wonder if this is the beginning of JRA, or still reactive (can take up to 12 mos to fully go away), and the rheumy is wrong. But, that doesn't explain the dizziness. Her leg swelled one weekend too. She has also had 3 "panic attack" type things, that was during a flare. The heat bothers her outside, but not in the bath. She has had tendon, bone, muscle, but mostly joint pain.

TIA, Kymberli
Posted on 05/07/09, 01:05 pm