Our appointment with Dr. Lopez went very well today. He said Mia still has some stiffness in her right elbow and bony overgrowth in her left knee and right toe. To people who don't know what to look for, she just looks normal to them. But, Jay and I can see it. We know the challenges she has faced and is currently facing and how the arthritis prevents her from doing normal, every day activities. She doesn't run as fast as the other kids. She doesn't take part in physical activities that other children are interested in. She still has trouble walking up and down the stairs. It will take time, but I believe she will live a normal, healthy life.
The bone scan that she had done last month did confirm that her left leg is longer than her right. Which could be the reason why she still has trouble walking or why she walks so slow and it constantly feels like we are pulling her along when she holds onto our hands. Our friends' daughter who was diagnosed with JRA at an early age is the same way. She also walks verrrrry slow because of the arthritis.
Sooooooo.....here's where we are at now:
SIX MONTHS FROM TODAY if she does not have any flare-ups, if her sed rate remains low (below 19) and if there aren't any other issues (uveitis - inflammation in her eyes), then he is going to start to wean her off of the naproxen. Hooray! However, if anything negative occurs during those six months then that just sets her back from getting off of the naproxen.
As far as therapy goes, he left that decision up to us. He said if we stopped it that we had to make sure that we are doing all of the PT at home with her on our own....something neither one of us has much time for. Or, we could just have Early Intervention come to the house once a week like they have been doing and we could cancel our other PT session with Mary. The only thing that is holding me back from canceling with Mary, besides the fact that Mia LOVES her and she is a really great therapist, is the change in weather in the next several months. We've seen how cold temperatures affects Mia's joints and I would hate to cancel with Mary and then have to call her up again should Mia have a flare-up once the fall/winter season is upon us. And who knows if we will even be able to get in with Mary again!! So, we have a lot to consider regarding therapy. I want to talk to Mary and see if we can go down to once a month just for now....so as to not lose our spot with her.
We are going to actively start adding things back into her diet. I am going to try her with the whole egg this Friday (ack!). I don't want to do it tomorrow only because she has to go to school and I would hate for something to occur there where we can't be there to help her. So, I am going to wait until Friday where I will at least be close by should she have any issues.
After that, I think we will try dairy. Ugh. And I'll save those worries for another day.
Today is a good day - she is in a much better place than she was nine months ago. We have much to celebrate!
Wonderful! I celebrate with you!
ReplyDeleteI just found your blog and wonder if you would mind emailing me with some more details about your daughter's condition and what you have explored with regards to alternative treatments. My daughter was diagnosed with JRA at age 3. She only had the disease present in her right knee. After six months of Naproxen and PT it went into remission. She did experience some damage to the joint and seems to have mild scolisis although she was still a very active and agile child. Last month, age 5.5 her knee swelled up again. I am really interested in exploring some alternative treatments, allergy testing, etc. but our pediatrian doesn't buy the whole allergy/arthritis thing, unfortunately. We are giving her fish oil, something called vitacel-3, ginger (occasionally), in addition to the naproxem (which we will have to give everyday now). Anyway, if you have any advice please email me.
ReplyDeletetoreycervantes @ gmail.com (no spaces)
Glad to hear that Mia is improving.
Torey
Another question, have you ever taken Mia to the chiropracter? We took our daughter to the chiropracter to help with her scoliosis. To my surprise he was able to loosen the stiffness in her knee which had prevented full extension for the previous year. Just a thought if you are trying to loosen up some stiff joints (and it also can help with keeping the immune system healthy).
ReplyDeleteOkay,
ReplyDeleteSo I might be completely crazy, but I have been researching non-stop for the past two days. We live in a very small state (population wise) so we don't have many natural/alternative medicine options available to us. Anyway, I stumbled across a site called the Ecology Health Center, talked to a woman called Pamela who is an accupuncurist (sp?) who works there and she made all sorts of recommendations. They sell something called serrapeptase that can be used instead of NASIDS (sounds interesting). And we are going to do a whole probotic ecology using OMX probotics, Perfect Food, Omegazyme, and continue with the fish oil. Also add in aloe vera concentrate. In addition, we are going to try to elimate all grains, and dairy. (This should be interesting). And finally we are going to do pH testing on a daily basis to try to reach 6.4 (and stay there). Please email me if you have a chance. I know you had a link to pH testing on your blog and am curious if you have used it and if it worked. Here is my email again. toreycervantes@gmail.com
and my blog http://torey-thecervantesfamily.blogspot.com/
I'm thinking I need to do what you do and just make a JRA blog for all the info I try and discover!:)