Sadie is doing much better from the RND. She continues to do land and water therapy and swim for good mobility. Ultimately I think the prednisone played a huge part in helping with the pain and allowing Sadie to start being mobile again. Since that time she just seemed to improve and improve; which was obviously great. We were busy living life and having fun. Sadie participates in PE fully, runs, plays and has fun! The prednisone was something that she took and each week decreased the dose until she was no longer taking it. About a week after the final dose Sadie was complaining of increased pain in her right ankle, mostly after being active. Both Bill and I noticed more swelling in that ankle, but any more it doesn’t take us by surprise.
A few times in the weeks after prednisone Sadie was complaining to me of her having a hard time taking a full breath; she was breathing fine, but taking in that full big breath of air was causing her pain. I really dismissed this as she had no other symptoms (no cold, no cough, no wheezing). Almost two weeks ago we saw Dr. W for a follow up on the RND and her arthritis. Just days before the appointment Sadie told me her neck was very sore and she was having a hard time looking back or to the left. The first complaint came mid-day; not first thing in the morning (ruling out in my mind the possibility of “sleeping wrong”). When we went to the doctors I didn’t want to say anything about it, but rather see if the doctor noticed anything. At the appointments I am working hard to step out of the role of Sadie’s voice; each visit this gets easier and easier for her. Often she would look to me to answer questions for her, but over the last year I have attempted to only answer when Sadie really could not verbalize or answer the questions presented (sometimes she struggles remember how long she has been in pain or things like that). This appointment I had really prepared myself not to do much talking and it was as if Sadie and I had talked about that because she really did an amazing job even asking questions!
Dr. W did the physical exam and said to Sadie “seems like you have a lot going on here, let’s talk from head to toe about how you are feeling”. At this point Dr. W started with Sadie’s jaw “how is your chewing” and this continued through every moving part. Sadie told her of her pain in her neck. Sadie told her that her hips have been hurting and talked to her about her ankle pain. Sadie even brought up the breathing stuff and that concerned Dr. W quite a bit. So, she listened to her breathing, did some pressing and pushing and said she wanted to chest x-rays and x-rays of her hips. Dr. W felt there was active arthritis in her neck, hips, knees and ankles. In addition she felt that she had some inflammation between the breast plate and the rib cage and this was causing Sadie’s chest pain. This surprised me as I had no idea that could happen. The chest x-ray was to rule out any other issues and confirm active arthritis was the issue in her chest. (two days later the x-ray did confirm it was that arthritis and nothing else).
From there it was time to talk about what to do… there has been some added supplements and some medication changes and adjustments. The first to point out would be the fact we added back methotrexate. It has been 2.5 years since she has been on this, yet Sadie remembers it very well. Metho is usually given by injection although it can be given orally, but is usually less effective. When Dr. W brought up metho Sadie was very upset as she felt that the injections were very painful and just the discussion of it gave her the taste of the medication in her mouth. Dr. W advised Sadie that she did not want Sadie to do anything she was uncomfortable with and that it is her body and she has a say. That said Dr. W said she should try the oral and see how it works. So, she started that last Saturday (taken once a week). Sadie had an upset stomach most of Saturday, but was feeling better by Sunday. Metho taken at the dose she is taking does take 6-8 weeks to work so they also increased her anti inflammatory and put her back on a very low dose steroid in order to give her body time to react to the other changes. Another change is that her remicade dosage has been increased. Today, as I write this, she is having her infusion and the higher dose. I am nervous for tomorrow with the dose of metho after a higher dose of remi, but prayerful that she will glide through these changes without any adverse affects. The low dose steroid has immediately helped Sadie; it always does. Any steroid is not my favorite thing, but neither is her being in pain. I asked Sadie after the appointment if her hips and knees have been sore and her response truly reminded me of what she deals with. Her response was “yeah, they hurt, but they don’t’ hurt as much as my ankle, neck and breathing issue; so I just don’t’ think of it as much or thought maybe it was that I was being more active with PE and swim”.
Right now Sadie is feeling good; we are all grateful for that.
I would ask that for those of you keeping Sadie in your prayers that you would specifically pray for;
1) Remission
2) Smooth transition with the medication and no difficult side effects
3) continued spirit of joy; Sadie is really learning that there is an emotional side to having a chronic condition; she can always use your prayers for her spirit and that ultimately any times she feels desperate she can lean not on her own understanding, but turn to our Lord and Savior for all peace.
No comments:
Post a Comment