We finally got an appointment for a follow-up with the Pediatric Rheumatologist. We had to miss an appointment in April because of being out of town, and they called yesterday to see if we could come in early this morning. We have been on a waiting list since April, so there was no way we would miss this appointment. Thankfully my mom was able to meet me at the clinic to watch the boys while I went in with Mia. (Thanks Mom!!!)
Since her uveitis is flaring up every time we go off the eye drops, we need try other meds to get her immune system to stop attacking her eye. The first one that is usually tried is methotrexate, since it has been in use for a long time, and the side effects and safety in children are known. We will be starting on MTX (Methotrexate) this week. Please pray it goes well. As long as she tolerates it orally, we can administer it with weekly tablets, but we may have to go to a weekly shot later on down the road (I’d have to do it myself – dreading having to do that) if it causes too much nausea. The MTX will compromise her immune system, so she will be more prone to illnesses. If anyone who will be around us is sick or might be sick, please let us know, so we can take a little extra precaution. The drug also affects folic acid in her body so she needs to take a supplement as well. The nurse said most kids tolerate the MTX just fine with little or no nausea… I’m praying she will be in that group.
She had to have more blood tests today, and more in 3 weeks. She is such a brave little girl. She cried a few tears when the needle went in, then proceeded to laugh at her mommy being silly while the phlebotomist was drawing the various tubes of blood he needed. I was threatening to lick her post-needle lollipop and stick it in my hair. We will be monitoring her liver function while she is on MTX since it can affect the liver. If she does start to have liver problems, they will hopefully resolve after discontinuing the meds. I hate that this has become a part of her life. I wish I could take it all away. She asked me today why there are so many things wrong with her. Ugh! Makes me want to cry. I don’t want her to see herself in terms of “what’s wrong with me” because she has health issues. I want her to see what I see… how wonderful, strong, brave, capable, and courageous she is despite her health issues. She might have this eye/autoimmune issue, but otherwise, she is healthy, so I’m very thankful for that.
The Pediatric Rheumatologist (the only one in NM) we first started seeing is now only seeing patients one week each month. The clinic has another Pediatric Rheumatologist that is flying in from California (we saw her today) for a week each month to also see patients. They currently have 2 positions open for permanent Pediatric Rheumatologists, so hopefully they are able to fill those positions soon. It is very hard to find someone in this specialty since there are only about 300 Pediatric Rheumatologists nationwide. I’m so glad that we are still able to see a doc here in NM, and not have to travel to another state to see a specialist. This is why it has been so hard for us to get an appointment.
The Rheumy also said that Mia’s joints were hypermobile (too flexible) and recommended that we take some precautions to help prevent pain and injury. She is very flat footed, and this might be the cause of her frequent foot, leg, hip and back pain. The doc recommended getting her arch support inserts for her shoes and taking extra precautions to try to prevent injury when she is doing sports activities. She said she should try to stick with lower impact sports like biking and swimming, and that gymnastics (which is what she really wants to do),dancing (which she loves to do), and running (which she also enjoys) might not be the best fit. I’m a little torn on what to do there… I don’t want to limit what she participates in based on what might happen or injuries that might occur. People get injured every day, right? But at the same time, I would feel guilty if she got injured doing something the doc said was a bad idea. I just don’t want to limit her activities based on “what if’s”.
So for now, her eye is stable. We will start MTX and hope that will allow us to decrease the eye drops down to zero. Then if she stays flare free on MTX for a while (1-2 years, usually), we can start to wean her off if it and hope and pray for complete remission. Her vision is stable in the bad eye, the last flare didn’t seem to cause further damage since we were able to be seen right away. She still has plenty of scarring in that eye though where the pupil is stuck down and oddly shaped. Please keep us in your prayers and thoughts. Keep praying for healing and for us and her team of docs as we make decisions for her. Pray that she tolerates the MTX with minimal side effects.