It was October 13, 2010 that Emily was diagnosed with Dermatomyositis, and officially diagnosed with Mixed Connective Tissue Disease. That week, she was kept inpatient for six days for heavy-duty steroids and other meds, along with a plethora of tests to rule out other not-so-nice diseases. It was last September 26th that she had the port placed, and it was early October when we realized she had staph in there. That led to an almost month-long stay. It broke her heart to have to miss the fall carnival at school and Halloween. Granted, she was able to trick-or-treat at the hospital, but it just isn't the same.
I am happy to say that this October the bad chain was broken; we had our typical overnight for meds, then we were free to go home! Thank you, Lord!
I didn't mention Zach again this time to our rheumy. I believe last month was just a fast psoriasis flare, likely due to the change in weather. He has a small spot or two, but for the most part it isn't big enough to concern us. I'm keeping my eye out, and I know he will tell me if anything changes. We are planning on using the Body Check Journal to see if we can establish patterns for both kids. If you have ANYTHING that you are trying to figure out (rashes, erratic behavior, allergies, flares, etc) I strongly recommend that you try this journal, lovingly made by one of our favorite arthritis mom's. She has discovered so much about her daughter by doing this herself, which is how she thought to make the journal!
Em's appointment went better than I thought it would. Our rheumy was sick, and it was a bit hard to understand him over the noise and through his mask, but we decided together not to make any changes yet. He said that studies show that Rituxan, Orencia and CellCept in combination are proven to help things like her throat issues, but it isn't something that we can do for more than a few months. He doesn't want to backtrack before giving the combo a fair shot. Since it's only been 2 months since she's been on CellCept, and 5 or 6 for Orencia, he wants to be patient for just a bit longer. I'm good with that. The biggest fear is her throat, so if this combo will help her throat the most, we will wait. Monday and Tuesday she received her Orencia (30 mins), Rituxan (4 hours) and IViG (over 12 hours). Wednesday is the day for her to recover from meds, and for me and Zach to recover from stress, and lack of sleep. Poor little man has a cold, too.
It is crazy how much has changed with Em in the past month or two. When people ask me how she's doing, I have no idea how to answer. Here's why: yes, the throat problem is pretty big, and scary. However, she has been running around, trying to hoola-hoop, and she has been giggly. Really giggly. She sounds.... happy! On the flip side of that, for a few weeks there she was taking 2-3 baths a day. Usually she does that when she's hurting or stiff. I have no idea what to make of it, but I take the running and giggling as good signs. It's been so awesome to be home with them more!!! I expect them both to be more giggly when we change our homeschool program. We are just worn out from the amount of work they have around other things, like therapy. We found a new program that I suspect will be the winner for us. I know two families that use it and absolutely LOVE it. They have similar situations, so I think this will work well for us.
The steroid weight has started dropping more! She started steroids at 42 lbs. (and really under weight.) Two months later she was 75 lbs. Today she was 60.5! Her clothes are falling off of her. I had to go buy her new jeans. She fit into her FAVORITE pair of old pre-steroid jeans! So exciting! I realized tonight that if she is wearing a large shirt you can't see her belly anymore. This is helping with the activity level, I'm sure. Oh, I am so glad! Next month I will ask about the next decrease. Currently she is on 3mgs a day.
Speech came into our room this morning for a consult, but she was so tired that we couldn't wake her. Our doc wanted them to see if there was anything they could do to help her swallowing issues. Being the skittish type, she was afraid of talking to them anyway. I will have to psyche her up for it next month. Another thing that was supposed to happen was an ultrasound of her hands. This is more for the doctors benefit for now, but I suspect that it could have long-term benefits. He is doing an informal study on ultrasound for Scleroderma hands. I was unable to get specifics out of him, but hopefully that will also happen next month. I would like to have the opportunity to help with some of the science involved; being a test patient is great when it's painless! It may even help her one day.
We are talking much more formally around the house about going gluten and processed sugar-free. We are going to try! I expect that it will take quite some time to make the full change, but it may well be worth it. We shall see! I certainly want to try. Since getting into making our own household cleaning products, I have been looking into making moisturizer, lip balm, shampoo, soap and laundry detergent. I am hoping that this may help. It can't hurt!
Last thing to add is that we have a blog guest post up! The Arthritis National Research Foundation has made it their mission to highlight stories like this. It made my day to see this made it up! And I believe that is all. I am so exhausted to I cannot recall anything else. I am heading to bed. Have a wonderful day ahead!
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