My homework for OT was to massage Phoebe's right hand, maybe with a little bit of lotion, to start getting her used to it being touched. Then, we could move up to doing some finger bends, to help her mobility. Well, a couple days ago, I started making an effort to do that, and was also trying to rub her hand lightly when I would read her a book. In general, she does not like her hand/fingers touched at all, so you can only do it for a few seconds before she moves her hand.
Before Doctor B had located the arthritis in Phoebe's knuckles, I was completely unaware of it as a problem spot for her, other than that I was curious about how she didn't seem to have a dominant hand yet and would switch back and forth. Well, this weekend, Phoebe's knuckles are having a flare up. On Saturday, I could feel exactly what she was talking about with the arthritis. There is a hardness to them and they were looking more swollen. And there was a new issue.... on the back of her hand, opposite the palm, Phoebe now has a puffy, swollen welt. Not red or irritated, no bug bite or pimple, but definitely swollen.
By Sunday, it still had not gone away, so I decided to get more information about this and reached out via the Facebook group. I really can't imagine going through this whole diagnosis process without an instant support group at my fingertips. It's so invaluable to me. Anyway, I was kind of waffling on emailing my doctor or contacting the Rheumatologist On Call at the hospital, but the first commenter just encouraged me to call.
I left a message with the operator and was called back within half an hour, as promised. I spoke to a lovely doctor, who works with Dr. B and knew about Phoebe because she'd heard about the toddler patient getting hourly eye drops. 😩
I'd never called the On Call before! I told her we were still new to this and just weren't sure what we were seeing. She was so kind and helpful.
She sent me a follow up message, summarizing our conversation, so I'll just use that here:
"....the new swelling likely reflects Phoebe's ongoing inflammation from her active arthritis -- sometimes this occurs as inflammatory cysts or nodules and isn't always limited to the joint space -- that'll take some time to calm down since she's only recently started the methotrexate.
For now, just keep an eye on it and be reassured that Phoebe can still use her hands without issue. It's unlikely the swelling will rapidly progress, but if the swelling worsens to the point where it's painful at rest (or she flat out refuses to use that hand), the whole hand starts to appear taut/shiny, or it feels much cooler/turns dusky blue/purple (a sign of decreased blood flow), please take her to urgent care/ER."
I also messaged our doctor, I'll probably hear from her tomorrow. I was also asking them both if Phoebe should go back to the OT sooner than the 19th, as her appointment is kinda far, but on call doctor in her follow up message said she thought it wouldn't be helpful for this. I guess my one worry is that since I was (lightly!) massaging her hand and then boom! a new hand symptom, I can't help but wonder if I could have actually caused things into getting more irritated? ***worries***
Anyway, so now we have a cyst of synovial fluid or maybe a nodule, but overall, the instructions were just to leave it alone and wait for the MTX to keep building up to hopefully work. Injection Day Tuesday is just around the corner again.
I really couldn't get a good picture of it, Phoebe kept moving around. If her hand is more flat, you can definitely see the lump.
Over the weekend, Jason and I totally perfected team eye drop treatments. Yay! I guess that is one benefit of having to do this for so long, we are getting to be pros and super fast. Phoebe is even better with it, because it is over very quickly. We are just so determined now. We tell her every drop has to count! No more exhaustedly "hoping some made it in", we are really pulling open the pocket of her eye (not easy to do!) and making sure it gets in there. That is not fun, but we have to do it. I'm not looking forward to having to go back to having to do it alone tomorrow afternoon.....
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