It's time to change the title of the blog again! My 9 year old is now an old ten year old lady! I can't believe it's been ten years. I feel blessed every day to have these kids. Today was a good day. She was very tired from her meds yesterday, so she stayed home today. I ran her brother to school, ran to the grocery store to pick up her cake, ran back home, and then had to run back out to take my oldest to the doctor. After a trip to CVS for more meds, we were back home. She had kept telling me over the past month "I can't wait to go to therapy on my birthday! Miss L.A. will have to wish me happy birthday!" She was too tired to go today. She requested pizza for dinner, so I ran back out for pizza. We all had a nice night laughing, having a hug war, and just enjoying each other. I also noticed tonight that her pants are falling down. Why is this significant? She is definitely losing a LOT of Pred pounds lately. She's lost about 10 steroid pounds in the past couple of months. The only way that we can tell is by looking at how her clothes hang on her. Shirts that we bought last November that she was popping out of by the end of that month are now looking more like dresses. I know that it's not going as quickly as she'd like, but there is true progress.
So, we had appointments yesterday. She has done pretty well without an NSAID over the past two months. She has had some days with a back ache, or knee pain, or a bad elbow day, but overall she's done very well. Well enough that she didn't want to try another NSAID. Works for me :) However, she did notice that she has 2 new bumps- one on each hand. She told me that they were rheumatoid nodules. (There's a switch! LOL!) We remembered to ask the doctor yesterday and he confirmed it. All of us are pretty surprised. She hasn't had any nodules since she started Enbrel in late 2008. They seemed to only pop up when her JA was active, and right now it's actually been pretty quiet. Well, maybe not as quiet as we thought. Where the past few months have showed low inflammatory markers, yesterday showed that her SED Rate is creeping up. The ranges for kids vary, but the range our hospital uses shows the normal range ends at 20. Her SED was 22 yesterday. No, not significant, not the 39 that it was last October when she was diagnosed with JDM, or the 79 that it was at one point last year, but significant enough that we'll need to keep a close eye out for more symptoms. I really don't want to take her off of Remicade. I don't want to have to make another change. This combo seemed to be working so well! I'm not going to panic. We'll just watch for now. He felt that her ankle was warm, and her Raynaud's is getting a little worse again, but otherwise she is doing well.
And then there's my son. People that know me well will tell you that I have little patience for drama. I try to be as realistic as possible. I hope and pray for the best, but I expect the worst in a realistic fashion. I have excellent intuition. There are many things that I know, though I couldn't explain how or why & it probably wouldn't make sense, anyway. I just know. I have always known that the idea of my oldest having arthritis is preposterous. It would make as much sense to worry about her having arthritis as it would worrying about my little people running away to join the circus. But my son.... I've been waiting for it. I've held my breath hoping that I would be wrong, maybe just paranoid because pretty much every ounce of my spare time has some sort of arthritis involvement. But I knew that one day he would be diagnosed. Yesterday was that day.
A little background. Em was diagnosed with JA in January 2008. By May 2008 Zachary had developed psoriasis. Of course, "kids don't get psoriasis" was what our first dermatologist claimed, even after we had him scratch tested for allergies and the allergist wrote a note saying it had to be psoriasis. This guy claimed it was impetego, a fungal infection, ringworm, eczema, a yeast infection... everything but psoriasis. We switched dermatologists after we did some reading up, and realized that it was psoriasis. He had a classic case. It started by taking over his ear, then it moved to his head, forehead, cheeks, chin, and eyelids and eventually everywhere. We have never been able to gain any control over it. Not really, anyway. He did have a short period of time that he was mostly clear, but then it came back with a vengeance. I'm not good at guesstimating, but if I had to, I'd say he has about 70% coverage right now. It's bad. It's not comfortable. It's very visible. It's very out of control. Aside from the vat of oily, greasy Aquaphor, nothing helps. So, I read. I look for things. I know what to look for. From the MCTD, Emily has what they call "sclerodactyl" hands. I have read that people with PsA get the "dactyl" hands. Well, I took a shot in the dark and figured out that the two were probably pretty close. I figured that Em's was different mainly because of mild scleroderma features, which is what makes her fingers look tight and shiny. Take away the scleroderma part of that and... well, you know where I'm going with this. Of course, right now hers still look like overstuffed grapes that are going to explode any second, but that's also from the steroid swelling. Take that away, and I knew that his hands look dactyl. That bothered me. I've watched his nails turn yellow, pit, look horrible. Those are signs of PsA. He's had heel pain- a sign of Spondylitis, the type of arthritis most often associated with PsA. I begged his pedi's to test him back in 2009. Everything was negative, but I was sure it was wrong. I was totally going to enjoy him not having any pain, but I knew that it was just a matter of time. So, this past August when he came to tell me that his jaw hurt and was clicking, my heart stopped. Again, I just knew. I hoped I was wrong. I hoped it was TMJ. But I knew it wasn't. Of course, Kevin was still unemployed then, so when our dentist wanted $100 for a panoramic x-ray, I wasn't thrilled. I also knew that arthritis would likely not be picked up on a panoramic. Generally they run MRI's. I knew that I had to get him in to our rheumy's. I took advantage of one of our docs volunteering at our JA Family camp. I asked her to look at him. She agreed that he needed to be seen. I then set about trying to get our pedi's to run those same labs I asked for in 2009, but with an ANA and an HLA (spondy) series thrown in with a CRP & ESR/ SED rate. Thankfully, they love us and they know that we are not trying to scam or hallucinate problems. While not being seen as early as I wanted him to be since Emily was stuck inpatient while he was supposed to have his appointment, I finally got Zachary in yesterday.
We saw the new doctor. He isn't really new to me; we saw him more the time that Emily was inpatient than anyone else. We really grew to like him and his wife that week. He was originally thinking about ordering the MRI for his jaw, but he can feel the arthritis in there. He also said that it would be very unusual for him to NOT have something more with as much psoriasis coverage as he has. He was intrigued by his fingers, too. He saw the dactyl look of them right away, and noted that they are all tight. I'm not nearly as fazed as I probably should be. Maybe I'm just in shock, but I think it's really because I was that certain that he would one day be diagnosed. I've had so many reasons that I've just tucked away up in a corner of my brain, waiting for more puzzle pieces to fall into place. If anything, I'm relieved. No, I certainly don't want him to have arthritis, but I do understand that these things are much easier to control the earlier you start trying. I have seen kids that took so long to get diagnosed that they can't get under good disease control. I wasn't about to let that happen. And that is why I'm relieved. We're just waiting on our Enbrel prescription to work its way through our insurance. I've already picked up his Methotrexate. He'll have his first dose on Friday night. We're starting him easy- he'll be on the pills, mostly only because Enbrel works better with MTX. Hopefully this will be what he needs to help his jaw and calm his skin down. It's so bad that, when he gets up from my desk after using my computer for a while, there's dead skin all over my chair, desk and keyboard. How can that be comfortable??? So, we keep breathing. One day at a time...
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Tuesday, December 6, 2011
A birthday & a new diagnosis...
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