Sadie saw her rheumatologist yesterday and she had a great appointment and we got some clarification on a few things that was very helpful information. As far as her general arthritis issues – she is doing great.
There is no swelling to be found anywhere. The interesting part of that is that she is still experience quite a bit of pain in her right ankle and if you were to look at it appears swollen. The rheumatologist said she does not think it is active inflammation, but that her joint is deformed and therefore tissue is being pushed together in certain areas that causes an appearance of puffiness. She said that pain is probably primarily from bone on bone rubbing and that maybe it was a good time to re-look at fusion. I explained that the surgeon did not feel that was a good option (back when we first started talking surgeries a year ago) because he felt it would 1) stop her growth and 2) cause her more pain then she is currently in. That said the rheumy agreed and said it is probably good to wait until she is done growing or until we do the growth plate surgery (to help her right leg catch up to her left). So, that said… no change in RA meds including the fact we will keep the remicade infusions at 6weeks rather than 4 weeks. This is a great thing for so many reasons including the fact she won’t have so much medication going through her body. On another growth issue… Sadie has hit 5 feet! This is huge as she would not be growing if there was active inflammation in her body and most kids with RA are generally smaller kids, so this is good as we need her to get as tall as possible before her surgery. She has grown 4.5 inches in 10 months! Amazing!
The one change that was made is that Sadie will go back on the anti-viral medication indefinitely. Her doctor explained that although it is very rare to see shingles appear a second time, it has happened. The bigger issue she stated is that the shingles issue actually made it clear to them that when Sadie had Remicade it does its job and it does it well. Remicade is intended to knock out the immune system and it does this so well that anything that walks by Sadie after infusion (within that first week) she will catch and poses a threat to her in the sense that it could get worse for her then a “healthy” person and therefore land her back in the hospital. So, the anti-viral medication acts as a protection for her during her weak times.
From here Sadie has remicade the first week in January, mid-February and late March. She will go back to see her rheumatologist in March and we will discuss further “ankle options” as we go and see the surgeon in June to talk about the growth plate. All and all it was a really good appointment and good to know that her body is doing well and growing! The ankle is an issue on its own and even though she has dealt with this for a long time, we still have to remind ourselves that it is okay to adjust our lifestyle to fit to what her ankle will and will not allow us to do. Sadie had fully participated in PE this year which is a big deal and we take each of those big deals and become very grateful!
Thank you for your continued support and prayers. We wish all of you a Merry Christmas and a healthy and happy New Year. God Bless, The Jordan Family
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