We have a lot happening right now, as always. I'll start with Emily's appointment. Hers was actually great! I suspected that it would be. Minus the steroid weight that she still carries stoically around, she's feeling better than she has in a very long time. Since we've added the Rituxan into her infusion schedule, she's now able to strap herself into her seat belt in the vehicle's by herself, she can finally roll her windows up and down in the car, and she's finally climbing stairs again!!!!! That is huge to us. I really hated for the kids to go back to school; I'm the weird mom that actually likes hanging out with her kids, but I knew that it would be so good for Emily. She pushes herself at school in ways that she won't at home. I'm so excited to talk to all of them when they get home from school, but especially to find out what physical activity she has done.
The doctor was impressed at how far she has come on her Rituxan. We are leaving her Remicade dosage the same, but we are able to decrease her Prednisone again! We tried in July, but that was before the Rituxan. The doctor did note that her left hand feels tight, but otherwise she was amazed at her energy. She's also very happy that we have our port surgery scheduled. Emily & I can't wait for that. I'm so glad that Em's on board with this. I really, truly feel like this could potentially be the best decision we've ever made for her. Every infusion her stress level is worse. She's great until the nurses come over with the supplies. This time, they went & got her new favorite nurse (because she can get her on the first try usually) from the unit next door and had her waiting. Em hates having the needle in or near her hands. That's the first place they went. She just freaked- shut down. Next thing I knew, she's kicking, waving her arms around, thrashing, and screaming frantically. The more upset a person gets, the harder the veins are to access. They had to give her a break. Even worse, her nurse warned her that if she didn't calm down she would have to leave because she had other patients, but Em just couldn't do it. I think Em understood why she left, but I think she felt bad about it. I totally agree with her needing to get back to her other patients. She can't wait around all day- especially when it's not her unit. I really appreciate how well the people in this facility get along. There's a high level of support that I really appreciate seeing. The infusion room nurses have to go through a lot. The hours are good, but they have a lot of other screamers and harder kids. Somehow they always seem to be a happy bunch. It makes it so much more fun to go, because they're all crazy. :) For us, after the pokes are done, we can chill out. (Often literally; it's freezing in there!!!)
Otherwise, her appointment went well. I asked if we'll be ok to go to the family weekend at camp since it's the weekend after her port placement, and we're cleared for that. The rest of what we spoke about wasn't actually about Emily.
I've debated on talking about this since I really don't know what's going on yet, but I decided that no matter what it turns out to be, these are the things that we have to worry about. For anyone that wonders about the types of things that go through our heads, here ya go.
I mentioned briefly at the end of my last post that my son had mentioned his jaw was clicking. I swear, my heart stopped last week. He showed me how he can pop his jaw and how it clicks and hurts. I was dumbfounded. When we were at the conference, we attended a session on JA & Jaw issues. We missed the first 20+ minutes because we were speaking to another doctor in the hallway. What we caught was that jaw issues are usually silent, and up to 81% of kids with JA have jaw involvement; the speakers says that evidence shows that the jaw may actually be the first joint affected. My son has had psoriasis for about 3 years. He has nail presence and other signs that lead to potential psoriatic arthritis. Now, I'm not by any means saying that he definitely has PA. However, when I asked our rheumy if she felt that it could be, she said that given his psoriasis and our family history, he definitely could be developing arthritis. SO, I'm trying to get a panoramic x-ray appointment set up for him, but since we are totally broke from so many trips to Shands, I can't do that right now. At least, not with his regular dentist. I've emailed our hospital about it. I figure, if it is PA he'll need to see the rheumy too, and since we're always there anyway I may as well schedule it for when we're there with Emily. I am praying that it is just coincidence. Not that I would want him to have TMJ, but TMJ would totally be better than deterioration from arthritis. Not to mention, at least TMJ only affects the jaw area. Our rheumy said that most PA is considered in the Spondylitis family- something I haven't read up on yet. I've read up a lot on PA today, but I think we're in for a wait. I really hope that my precious little boy doesn't have to go through this crap, too. If he does, I'm hoping that we are catching it way earlier than most kids are diagnosed. There are some things to be said about a heightened awareness!
And I will leave you with food for thought. We are very blessed to have (for Emily only) Medicaid as a backup from Social Security. There is no way that we could afford our copays without it, as I will show below. This is a copy of our insurance explanation of benefits. Emily has a $3500 deductible. If we hadn't met her deductible, and if we didn't have Medicaid, I cannot imagine what our copay may have been. We have a 20-30% copay normally. I know that we had a balance from one bill that Medicaid wasn't covering that was over $5000. There was another for $1200 and another for $1500. How could any normal person afford these treatments? Why do they have to be so expensive? And, if arthritis is "no big deal", then why would we be paying such a high amount of money per visit??? The visits include seeing the doctor, labwork, and infusion meds. Of course, it's the meds that are expensive. When she was on Enbrel, we could do her shots at home and with only a $10 copay with their assist program, but without insurance they would have been $2500 per month from our pharmacy. Someone told me once that they were charged $36,000 for an IViG. I can't find it again, but I believe I read that Rituxan goes for $11,000 for the first 2 doses. The rest are smaller doses, going for more like $5,500 each.
The All Children's bills are from our therapy appointments at a specialty center. She has occupational and physical therapy weekly. (Her therapists are awesome!!!) The last entry is from our pediatrician. (LOVE her!) I learned a few years ago that doctors charge you by your conditions. If you are a very healthy person seeing your doc for something like a sinus infection, you will get charged MUCH less than my daughter will, even if she's being seen for the same sinus infection. Good times, eh?
Just wanted to say how much appreciate your blog. My son has juvenile arthritis and so I know what you are going through. I don't know if you have looked into any natural things, but it has really helped my three year old son. Our rheumatologist told us it would have no effect, but he is surprised with the results of doing some diet changes. Please just take a minute to read this article about how it helped another little girl too. My son is not in remission but he is only taking less than 1ml methotrexate/week and doing awesome! Just thought you would like to know that there are some other options out there that doctors are not familiar with.
ReplyDeletehttp://robbwolf.com/2011/08/22/emelias-story-she-is-my-walking-miracle/