Yay, it's on the website now!
Click here to visit the page that has bios for her and the other 3 Honorees. I sent them a couple of pics of her (including hospital and daily life shots) and they went with one from the MRI. The lady I've been talking to said Phoebe is just too precious. She does have quite the sparkle in her eye, despite being at the hospital! I thanked Dr. B for nominating her to be the honoree and she said Phoebe was the first person she thought of. Which doesn't, um, exactly me feel great, because I'd rather not be in this situation at all, but obviously was very nice of her.
The adult honoree says her husband describes the biologics as "the juice." Well, that's good because Phoebe is going on the juice.
We went to see Dr. C for an eye check and, a bit frustratingly, she doesn't fully agree with Mr. Uvieitis Specialist Dr N. about the state of inflammation. She said every doctor is different, so he assessment may be based on what he thinks of as concerning, and maybe to him +1 cells in the eyes may be less concerning, but to her it still indicates a problem. But Dr. N did kind of say that he thought the inflammation was better with the understanding that Phoebe would still be going on a biologic. It is kind of confusing having mismatched opinions about the severity of her eyes, but basically everyone is in agreement in pointing us in the same direction---- that Phoebe needs stronger medicine.
I went home and emailed Dr. B, our rheumatologist and, after speaking by phone today, we are going to move forward with Remicade.
She is going to put in for the infusion center to contact us to make an appointment and then from there we will require Insurance Pre-approval. Some insurance companies want you to try Humira first before they will approve Remicade. Remicade is also technically not approved for use in children. Dr. B says this is because the study they did was poorly conducted, and that the medicine still works. Humira and Enbrel had better conducted studies, so they are approved medicines, but Remicade is still just as good. However, because the chimerich antibodies, it is more likely for her to develop antibodies against it. At which point, we would probably have to go to Humira.
She will have 2 infusions 2 weeks apart to start, and after that every 4 weeks. Saturday infusions are also possible and we can get labs done at the same time. A child life person should be around to help soothe Phoebe.
I asked in the Facebook Groups for people to share their experiences with Remicade vs. Humira, particularly for toddlers. I got about 30 responses from lovely helpful people.
Overall, I feel much more reassured. Many people said that Remicade is working well and reiterating everything I had heard about what a painful "beast" Humira is. A few people did say that a few moments of pain vs a whole day being consumed by an infusion is not the best trade off for them, but others said that even if it is inconvenient for the parent, it was much much better for their child. Even more encouraging: I heard that because they premedicate with tylenol and benedryl (because of the chance of allergic reactions), the benedryl makes their child so sleepy, they basically dozed through the whole thing. Fingers crossed that can be our experience. 😮
Someone else warned me that despite getting preapproved for Remicade, Blue Shield later tried to deny them and so was sending them $50,000 bills over 8 months while their child was getting treatment. But eventually they ponied up and paid for it. So I will definitely be getting everything in writing because that sounds terrifying.
Anyway, I still feel kind of sick to my stomach about having to go down the route already, but here we go.
Oh and I guess while I'm posting, I'll write about last night's shot.
Jason is getting better about doing the shot but Phoebe is figuring out that we are going to do it still faster than I would like. We did test out showing Phoebe all the steps that one time, prepping the syringe and everything, but overall, I think that just extended the process and wasn't great for Phoebe's sense of anxiety about the moment. Ug. I wouldn't want her to end up like one of those children who starts vomiting before their shots. So now we're just trying to have it ready to go, then we tell her it's shot time, and she gets to pick a bandaid and help wipe with the alcohol and then we do it. But it's still so scary for her. Phoebe has started saying "ow" ALL. THE. TIME. If something so much as bumps her lately, she says "ow", even if it doesn't actually hurt (or hurt much). I think it's definitely because of the shots that she feels so vulnerable.
My mom and sister are in town helping out with babysitting as Jason's parents are on a trip, and my mom got a bunch of sprinkles to put on our post-shot ice cream. Phoebe ended up loving the butterfly sprinkles even more than the ice cream! She crunched them up!
Phoebe also has a runny nose, but no fever.
Also, she is teething like mad.
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