A Significant Day

March 28th feels like a pretty significant day to me.  After Phoebe’s joint injections on Feb 21st, we scheduled our next rheumatology appointment with Dr. B. for today.  In that time, we were supposed to be staying on the anti-inflammatory naproxen and starting PT and OT.  

Instead, two days later Phoebe got her uveitis diagnosis and everything changed.  We got put on methotrexate injections and weeks of hourly eye drops.

How much our world has changed.

Today was a very busy day.

At 8:30 we saw our pediatrician Dr. Jen.  As Phoebe had just had her 18 month physical, she said she wasn’t even going to examine her, apart from having the nurse take her weight and temperature.  After that we just got to hang out and chat and she didn’t haven any other patients there, so we got to talk for a while.  It was so nice.  Phoebe was also extra pleased because she seemed to conflate Dr. Jen with my mom, who she had just seen this weekend.  So she kept calling Dr. Jen Mom-Mom, as they both have dark brown hair and wear glasses, but otherwise look nothing alike.  But it probably helped to extra comfort Phoebe that she was associating her with someone she liked.

Dr. Jen mostly just wanted to listen and hear all the details of what has been going on, especially with Phoebe’s eyes.  She said she still couldn’t believe every time she saw the note that said continue eyedrops “Q1Hour”.  She asked who referred me to the specialist and I said I asked if we needed to see one, because I’d read it was helpful, and she was like, “Good for you!!!!”   I said, “Ha ha, yeah, I was a little proud of myself, as I’m not a pushy person.” and she was like, “I’m proud of you too!!!”  She said if I ever needed any other help getting referrals to something that she was willing to help with that too.  It was thanks to Dr. Jen that we got referred to the rheumatologist immediately, as when I first went to the orthopedic, they were making me hold off until arthritis was confirmed with the MRI.  

We talked a bit about how specialists are kind have less bedside manner.  I’m not sure why that is, but I guess the more focused and more important you become in your field, you don’t put in as much time to make the connections.  She told me about going along with a family member is having some medical issues and she was warning them the specialist might be in the room for all of 30 seconds. And then when he did come in, he sat down and said, “You have three choices.  1. You can do nothing.  2.  You can do this  one thing.  Or 3. You could do this other thing, but you’re too old for it.  So, which do you want to do?”  Woah, back up, right??  It’s a little overwhelming.

Dr. Jen filled out Phoebe’s rather lengthy forms before I left and gave me copies.  She then gave them to her nurse to fax, but I guess she didn’t do it immediately because I got a call from Stanford half an hour later saying they still hadn’t received it and needed it asap.  So I called pediatrics and had to ask them to fax it.

Phoebe took a little nap and we chilled at home and then it was off to the rheumatologist.

I am so glad of how all my appointments aligned this week because it was so helpful to see Dr. B!  We discussed if Phoebe’s uveitis needed to be treated with a biologic, which medicine was the best option.  

Dr. C had mentioned Humira and Remicade as options at our ophthalmologist  appointment,  but Dr. N had not seemed interested in Remicade and wanted to go straight to Humira.  Dr. B is going to talk to him as to why he wouldn’t want to use that because that would actually be her recommendation because Humira is so painful and Phoebe is so little. She said that people describe Humira like “injecting shards broken glass,” which pretty much made me die inside to hear.  She said that they can teach you how to mix it with lidocaine as a numbing agent, so that makes it less painful, but not pain free.  

Okay, here is some info about the drugs that I don’t fully understand.  I’m looking up some additional facts on a website, which warns that some people may find it “disturbing”. Ug, here we go:

Most drugs are made through basic chemistry... you get all the right chemicals together and make the medicine.

Biologics are called so because they based on very complicated molecules-- antibodies.  Antibodies are what go into the immune system and start attacking viruses and bacteria.    Biologic drugs create “false” antibodies to trick the immune system, so they have basically revolutionized the treatment of auto-immune diseases.

Humira is called so because it comes from the word “Human.”  It uses all human based antibodies.  However, you can still have allergic reactions to it AND your body can start to reject it.... your body will figure out Humira is not natural and start making anti-Humira-antibodies to counteract it.

Remicade is only partly human.  It uses “chimeric” antibodies that are also partially from mice.  So, like the Greek monster a chimera (part lion, goat, and snake).  Apparently Remicade is like 70% human and 30% murine  (mouse).  Because of the murine part, people are more likely to have an allergic reaction to Remicade than Humira, so it is often pre-medicated with Tylenol and Benedryl.  Remicade is also more at risk of failing and having you start developing anti-Remicade-antibodies.

Although Humira is made with only human antibodies, it still uses hamster cells in it too. (!!!)  Delightful reading, this is some crazy scientific shit, guys.  I guess if my child has to have JIA, I’m just going to be thankful that I live in a time when we have such complicated treatments, which, despite being awful, can also apparently make you much much better.

The benefit of Remicade over Humira is that it is given through infusion, once a month.  Infusions are time consuming and we would have to go out to Stanford for it, but it could even be done on a weekend.  OR if we come out during the week, we could combine it with other stuff.  We could see Dr. B for appointments the same day (as she is there more often than in her W.C. location.).  If we work it so that we come on the day of Phoebe’s methotrexate injection (she wants us to continue that for sure), we could get the shot done there, rather than at home.  If we need lab work done, we could also get that done that day (Phoebe is going down to labs every 6 weeks because her labs from Friday were generally ok).

So the benefit to our family overall is that we could make things more of a one stop shop.  And it could take some of the injection stress off us.

It does sound like Phoebe would only be doing Humira once a month as well, which is much better than bi-weekly, which is what someone told me to expect on Facebook.  And while we could do it at home, it would still SUCK no matter what.  

Dr. B said that she ultimately wants to be the one to be in charge of prescribing Phoebe’s medications, so she is going to be in contact with Dr. N.  (So I was definitely reading that “No, *I* am putting her on Humira” comment on Monday correctly.... Dr. N wants to be in charge of his patients.)  But Dr. B has done a lot more to earn my trust and respect, and I like her plan much better.  

No matter what, we have a long road ahead.  Dr. B said she typically wants uveitis patients to have “quiet eyes” with no flares for 2 years before going off of therapy. :(

The good news is, apart from her hand, she did not have any noticeable swelling or active joints elsewhere. YAY YAY YAY YAY.  So we need to keep preserving the good done by her joint injections!!

Then, as we were about to leave, Dr. B remembered something else.  She asked me if I knew about the Arthritis Foundation and that they were having a walk on May 5th.  I said yes, I was aware of it, but had kind of been thinking we were still pretty new, so maybe next year.  Well, she said that every year they have some “honorees” and she wanted to know if she could submit Phoebe was a possible honoree for JIA.  They would maybe want me to write something and put her picture on things.  And I would have to make a team and do some fundraising.  Which I don’t really have a ton of time for, but it would be cute to have some Team Phoebe or Phoebe Steps t-shirts awww!  Anyway, that was kind of exciting because I know she has other patients, and how sweet is it for her to think of Phoebe?  I said yes and that I definitely have plans to try and have sort sort of a bigger advocate roll later on.

After that, I left to pick up Cordelia from school and from there we went home briefly to collect things for the night.  Cordelia went to Meme and Papa’s house for a sleep over, extra special because her cousins were also spending the night.  I hope they eventually all get some sleep because I think they will be having so much fun. :)

Jason’s mom was feeling down about all the things we have to keep doing to our baby and being very cautious about starting any new drugs, which I totally get.  I definitely value her opinion very much-- she probably knows Phoebe the best of anyone right after me, as she gets to spend even much more time with her than Jason does because of work.  But the timing wasn’t super great because it totally broke me down.  I cried off and on the whole damn drive down to the hotel where we are staying tonight.  I can’t believe all the stuff we are having to face.  Phoebe isn’t getting any breaks, and me pushing to get seen by a specialist sooner rather than later just means we keep accelerating things to fight more aggressively, and it’s just so wearing on her little body.  

We got to the hotel and Phoebe had so much fun playing in the room.  She was giggling up a storm.  Unfortunately, our appointment is not until 11:30 tomorrow, so we are going to have hours and hours of this little girl saying EAT and not being able to feed her.  We can do clear fluids up until 9:30 so at least she can have some water when she wakes up.  They asked that she be freshly bathed prior to the procedure so we’ll pass some time in the morning with a fun hotel bath.  

This time I also knew to ask if I’d be with Phoebe for sedation, and it sounds like no.  But at least I’m prepared for it.

Ok, 12 am, time to try and get some sleep.....