Dr C some how manages to be the nicest, peppiest person while delivering the most soul crushing news. Only a little improvement to Phoebe’s eyes; hourly drops must continue. This time she said she wanted to see us in THREE WEEKS Time. (methotrexate typically takes at least 6 weeks to work, so this will be 7 weeks of eyedrops total)
THREE. MORE. WEEKS. OF. HOURLY. EYEDROPS.
I mean, there are obviously worse things that you can be told, but we are just so weary of eye drops. I mean weary.....after four weeks. I can only imagine how we will feel after three more. When she first told me two weeks, it sounded like such an insurmountable task. Now we are going to go on to SEVEN weeks of this hell.
But, we are in the groove now, so I can just lie Phoebe down and she will sometimes protest, sometimes not, and then BOOM we are done. So let’s just keep going.
We also checked the pressure in her eyes again, and that was not fun. This time her pressure readings were like 19 and 24, which was higher than last time. But Dr. C said since she was resisting so much, she was squeezing her eyes, so that she wasn’t that concerned about it. But the FB Uveitis Group told me that under 20 was best for pressure; someone else told me that given her age, it should be under 13. So it still needs to come down.
The problem with prolonged steroid use is that it will keep building up pressure in the eyes and can cause cataracts. However, Dr. C said that Lotemax is best for her because of the types of topical steroid eye drops, it is one of the lower pressure causing ones-- others will increase the pressure faster.
I am a little proud of myself.... I told Dr C that I loved her but I was also interested in getting a second opinion, maybe seeing a specialist. (See, working on advocating more!) I prefaced it by admitting that I have been on Dr. Google/Mommy boards now, and I’d heard other kids were getting seen more frequently when they were in a flare and that the moms thought that hourly eyedrops for weeks were still really intense.
Dr. C said she was not at all insulted. Phew, you never know how doctors might take something! She still stood by her analysis and treatment plan, even if it sounds extreme. She said she didn’t think she needed to monitor Phoebe more often because she was showing some improvement, even if it was not at therapeutic levels yet. She said she would probably be sending us to a uveitis specialist herself if Phoebe wasn’t making significant progress after this next appointment, and she was more than happy to send us to one now. However, she was also pretty confident that they would be in agreement with her. She looked up two people for us to get referred to and said we should go ahead and see someone before our next appointment with her.
But basically, the bottom line is: inflammation is still not under control.
Maybe methotrexate will start to kick in more, but it is look like mtx alone is not going to be enough. So, time to start mentally preparing for Phoebe to be put on a biologic, like Humira (more injections), or remicade, which is an infusion. These are going to be some pretty scary drugs, that I was hoping would be like a year or more (or never) in our future and now I think they’re weeks away. We’ll be discussing it with Dr. B. at Phoebe’s appointment on Wednesday.
I also talked to Dr. C about the insurance problems with the Lotemax and let her know that we would need her to authorize more frequent purchases. She put one of her staff on it, to work it out with Blue Shield and Walgreens and (after some phone conversations later in the day) it sounds like we are going to start being able to special order A BIGGER BOTTLE. THANK HEAVEN!!!! Hopefully we can stop having the back and forth shenanigans!
Dr. C referred us to two Uveitis specialists. One that she works with often, and is in SF. The other is through Stanford Children’s and is in Palo Alto. She was not familiar with him, but we are already set up with Stanford, so it can be helpful to keep working within the network. Referrals got sent to both doctors.
The Stanford doctor.... Dr. N..... ‘s office called me within a few hours. They had an opening (maybe a cancelation?) for Monday at 9:30. Woo hoo! The down fall is that means I have to drive to friggin Palo Alto in rush hour. But at least Phoebe will have had something to eat first. I was much more reluctant to do it when she was fasting for the injections/anesthesia. The receptionist assured me that he is wonderful and that we were in good hands.
Then she called me back right after we’d hung up.... she ‘d forgotten to mention to prepare myself for THREE HOURS OF TESTS for the examination.
I am hoping that Jason can get the day off and come with me because that sounds really, really draining. Three hours of trying to get a toddler to let you look at their eyes?!
But I am excited to move forward with this and get all the detailed info on Phoebe’s condition.
That being said, I really can’t say enough about how wonderful Dr. C is, even when she is torturing poor Phoebe and telling us to do hourly eyedrops. In fact, she seems to be THE go to person in our area. I saw a girl from my school in the waiting room and when I was talking with someone later, we realized that it was Dr. C. who had referred her child for eye surgery as a toddler. We both agreed how we liked how she is such a straight talker, even when she is giving you terrible news.
My only complaint is that they have an animatronic cartoonish-looking duck on the wall that can wiggle and open it’s mouth to get kids to look in an area. This thing is like pink and orange and furry with a big plastic bill and big plastic eyes. Phoebe LOVED it before and could not stop talking about it or pointing to it, but Dr. C didn’t turn it on for her this time. Awww, sorry Phoebe. ha ha.
Next week is looking very busy.
Monday: Uveitis specialist in Palo Alto
Tuesday: OT and mtx injection day
Wednesday: rheumatologist
Thursday: PT
oooofff.
I had been PLANNING on Monday being the day I would take Phoebe into the lab for her blood work. But I did not want to do that on the same day as a THREE HOUR eye exam.
We have weekend plans.... so that really just left this afternoon.
So after Phoebe’s very long nap, I took her to do the blood draw. Honestly, this is the worst part for me. It takes so long for them to get all the little vials and Phoebe hates it. I told her we were going to the hospital and she needed to get a little poke to test her blood to see if the good medicine is working. She said “no.”
But we are going to be doing this every 4 weeks, so eventually we will be blood draw pros just like we are eye drop pros.
But God how I hate hurting my baby. I held her tight and told her I was there for her and that we’d have some gummies when she was done.
She got lots of stickers that said I WAS BRAVE. They had cats and dogs on them and Phoebe was very happy about that.
She is so brave. My brave, brave girl. We won’t stop being brave.
We are off having some family fun this weekend. Hourly eye drops can’t stop us!
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