Since the AP dr. halved my 4 1/2 yr. old daughter's Zithromax dose, she has had more swelling in her two bad fingers and her one bad wrist. She has also complained of pain in her wrist (not normal) but continues to use that hand dominantly. I can tell something has changed for the worst there and there is no question in my mind about that.
But.....over a week ago, she had an exam at the ped rheum's office. Actually, several because he had residents there.
So, the first resident said possible fluid on the left knee. Then he said fluid on the left knee, possible fluid on the right knee. Add another resident, add another exam demo (at least a dozen attempts) and we are up to fluid on both knees.
By the time we left, she had active arthritis in both knees, I was told.
Confusing, since her knees have not bothered her (mentioned it randomly when sister had the leg thing, but nothing consistent).
That night, going down the stairs, she screamed that both knees hurt. So I panicked.
But since then, for more than a week, nothing. We went to the beach - no stiffness during the long car ride. Ran, jumped, squatted to dig in the sand. Danced danced danced, even drops to both knees with arms reaching up in the air (um, ow?). Kept up with sixth graders all night trick or treating. Ran a Fun Run today, then went to dance class!!!!
Can you have active arthritis and not feel it????? Wouldn't she at least swell or something, with all this wear and tear? She isn't on anything except the Zith, and now not even as much.
She does protect the wrist, I know she is feeling more pain there, but I don't know what to think about the knees. Thanks if you have any thoughts!
Suzanne, I wish I could say something helpful, but I just don't know. I know it's possible to sustain joint damage without swelling or pain. Is there some reason the AP Dr cut her dose? Does he have anything to say about this new development?Pip
Thanks Gimpy and Linncn.
The resident thought she felt fluid on the left knee and reported that, I guess. They come and go, it's very secretive. They come back in and talk like they have already discussed things. "Oh, yeah, the other thing...."
Let me tell you, it was not all obvious. When he tried to get the other resident to see it, he kept pressing and running a finger along the side of her leg a million times. "See? No, wait, let me try again. Okay, see it? There. No. Okay, now. See that dimple? Wait it didn't do it." Etc. Usually when something like that happens, the resident will eventually mumble in semi-agreement, so we can move on. But not this time. I never saw anything, either.
And I guess all that examining did make her knees hurt later that night.
Thanks Pip, too! You snuck in there! That is what I'm leaning towards, but it is so hard to know, to be sure (well, you can never be sure).Dear Suzanne, my heart goes out to you and your little girl. When a child is sick it is the worst pain and fear. I can't help you directly with trying to sort this all out, but please know, I feel for you. (I had a chronically ill child, he suffered so from repeated ear aches, not until he was 6!!, yes that long did we discover he was 'allergic to MILK', It was a nightmare. He took shots, and finally out grew it. He has had no problems sense)
I wish you the best. Please PM me anytime. Lynda
Did you get my email? Pip Thanks so much, Lynda. Pip - I replied to one earlier, will check again. We are getting ready to watch "Wild Hogs", finally got around to renting it. Yes, I think she could have been copying her sister, but when the first resident said she thought she felt fluid, I felt compelled to say, "Well she did mention a couple of times...." and I think they latched on to that. I got cut off every time I got to "....but it was when her sister..." and of course never even got to the Mystery Dx aspect of that story LOL. We have to get our girls together! She claims short term memory damage, too funny! Well I hate to come in here and throw you in another direction...BUT...when I was a kid, I would run about and be normal, and then wake up ballooned like you wouldn't believe. And so my mom would take me in, and basically by the time there was any swelling, the damage had already been done. And no, I never seemed to feel it. And even at times with all the swelling going on I didn't feel it either. And others, I'd be a miserable little kid. Also, with my ankles being the very very first joint ever involved, I tend NOT to feel pain in them. I swear up and down its because they were so problematic in the very begining that my body just decided NOT to develop proper pain sensors there. Not saying that her knees have always been involved and no one knew, but ya know....just something to think about! Wish I had a better answer for you!! Hang in there, you've already made great leaps and bounds!
< =text/>_popupControl();
I can't help but to wonder like Gimpy if she is herxing on the lowered dose. I know Pip will have some more suggestions also. It is entirely possible to have damage or damage is being done without any pain or swelling. I don't know how much I like the dx of fluid on the knees. You had residents that couldn't feel anything and had to be "guided" along trying to feel the fluid. I really am stumped on this one and I hope Pip is not lol. Hang in there. AP can be that slow process like Gimpy said. I don't know...I still really want to just say it is a herx. Thanks again to all of you. I really appreciate everyone's thoughts and concerns. Katie, the problem is I keep waiting for the ballooning!!! It never happens! The knees are the same, day in, day out. When she first got sick, she walked funny and it was in her ankle. Not there now, per ped rheum and xrays. When it was in her ankles, he mentioned her knees once or twice, too, but it never made sense to me. And at a second opinion, this is what we were asked: "He says it's in her knees??????" Right after that, we agreed to have her wrist injected. When they called for the pre-op, he had ordered injections in her wrist, two fingers, both ankles, and her knee. I was like, "Huh?" Nurse had him call me and we talked forever, with me sobbing, "Why? Why?". He said he would call back. I tried to rephrase my question when he called and say I understood the wrist, but why everything else. Blah blah blah and I was again in tears and he said to page him when we got there the next day. Paged him and we talked again on the phone. Why these areas, when she isn't having trouble there and the second opinion said wrist only, like we thought? Blah blah blah again, and I'm crying again. He would only talk about rheum/joints in general - it did not pertain specifically to my daughter, to her condition. I didn't need to know what an injection did, I needed to know why she needed one. He gave up again, "Okay, I'm coming down there." And he came down and said they had a guy who would 3 or 4 joints at a time, and they had a guy who would do 7 or 8 joints at a time, but he wasn't there. So since the guy there only did 3 or 4 at a time, we could only do that, so let's do the wrist and the two fingers. So I said okay and that is how the decision was made. And now her worst areas are the wrist and the two fingers. The fingers are way worse than they ever were before the injections. Grammaskittles - AP does take a long time, but she has been on it a year now, with no herxing. AP has been a smooth ride for her, and I had hoped to keep it that way! But changing the dose has changed a lot. What did they inject her with? What ever it was, please don't allow it again. I got MUCH worse on Pred and most people here say its a relief. I wonder if some of us react the opposite of what the med is supposed to do. Does that make sense? Suzanne - the MPer's say you have to herx to heal. You're in a bad situation - you have a child that can't herx or the ped rheumy will use that as a reason to force her onto Enbrel. Didn't you get X-rays of the knees? What did those show? Pip It was Aristospan, and no, she won't get any more injections. The first time did help her wrist, but the second time she actually got worse. Funny thing. No knee xrays that I can recall. Maybe the very first visit. After the all that injection confusion, he wanted an MRI of her hands and wrists. Since she has to be sedated, I wanted the knees, feet, and ankles, too, while she was out. I wanted to know if what I saw in her was accurate. Had to stand on my head for that one!!! Even with our ped saying yes, yes, get it all while she is out. Still didn't do the knees! And feet and ankles came back with no evidence of active arthritis. Was anybody happy about that? No, because her hands and wrists were so bad. That is all they wanted to talk about. Well, that was no surprise to me. And it told me that what I see is accurate. Mommy-tology LOL. What kind of med is Aristopan? Pip Steroid. You know, I just did a little yard work and took out some frustration pulling up things. And I thought of something. What if I had really wanted all those injections? How would that have played out? We were there ready to go, NPO and all that good stuff - and surprise! 'The only guy working will only do 3 or 4 joints. Pick some. I know you were told she really needed all these joints done, but too bad. You've come all this way, starved and dehydrated your child (and yourself, since you can't eat or drink in front of her), expecting relief for all these joints, but oh well.' And, um, w-h-y does he only do 3 or 4? Does he consider more unsafe???? No, I shouldn't be so silly. They would have taken her in and done 3 or 4, then after the fact told me she wasn't tolerating something, etc., and they had to stop, so it would have been her fault. Been there, done that.
Copyright ArthritisInsight.com