Methotrexate is Working!

I took my girl to see the rheumatologist yesterday for a follow-up appointment. I am very happy to report we are seeing results from the weekly methotrexate injections! Originally, the rheum told me her sed rate was 41 and has only dropped a few points since she started. Yesterday, she told me her sed rate was actually 59 when she started and has dropped to 35. The inflammation is still high in her body, but it is making its way back down! 

She has full range of motion in her big toe and again and, while she still has some morning stiffness and is limping a bit still throughout the day, the swelling is going down in her ankle. The only joint that is of some concern to the rheumatologist is her left knee (the knee that has been drained twice; the one that was swollen when she started walking when she was 18 months old). It is very swollen with lots of fluid sitting on top:

The rheum wanted to increase her methotrexate dosage to 0.6mg, but is concerned how Mia is responding so far to the injections. She had some side effects (that are too be expected): she is very tired, gets nauseous a lot, has thrown up, and complains of stomach pain. So, she wants to keep her at the current dosage (10mls/0.4mg) and continue the daily 12mls of Indocin. She had Mia repeat the urine test because of the white and red blood cells found in it and because of how frequently Mia has to go to the bathroom - she is going all the time during the day and even wakes up during the night now to go to the bathroom. She's never done that before. We should get the urinalysis test back soon.

So, for now we stick with what we've been doing and go back to see the rheumatologist on January 10, 2013. Mia will have more blood work done between now and then to check her inflammation, liver and kidneys, etc.  Her rheum said to me if the fluid does not go down in her knee between now and then and if her sed rate is still high, she will want to start her on biologic medicine like Humira or Enbrel in addition to Methotrexate. 

We asked Mia if she is able to tell a difference since she started the new treatment and she said, "Yes, I don't feel the pain as much anymore like I did." By the end of the appointment, Mia was showing the rheumatologist how she can do center splits and right splits (they are learning them in dance right now). The doctor was very impressed and even wrote it down in her chart that Mia can do the splits! :)

Tonight is our fifth shot with Mia, and our first time doing it by ourselves with no nurse at the house. We've finally got a good system down - I am the one who gives her the shot and my husband is the "Encourager/Hand-Squeezer/Hugger." We make a good team!

Methotrexate Injections: One Month In

I am very happy to report we've done some "overcoming" in the last month! We have done four methotrexate injections with Mia so far. We will do the fifth one this Friday and we are starting to (finally) get into a flow. 

Mia has done amazing. Seriously amazing. She has gone from a girl who was terrified of the needle during blood work (that she's had done over the last five years), to a completely calm and relaxed child during "Shot Night." It's a piece of cake for her now!

Her first injection, which wasn't fun for anyone, was done at her pediatrician's office so we could learn how to give her a shot:

(first Mtx injection - 11/2/12)

The following week, we started doing them at home. A dear family friend of ours, who is a nurse, came to our house to give us further instructions and to help us learn to do it at home. The second injection wasn't as hard as the first, but was still hard. We had to hold Mia down while the nurse gave the injection. It was better than the first week, but still difficult to give to her and hard for her to sit still and be relaxed.

But, by the third injection (and Mommy's FIRST time giving her sweet daughter a shot), it was a piece of cake!

(third Mtx injection - 11/16/12)

She did it. I did it. We did it. She held Daddy's hand and, while the nurse observed, I gave my daughter her first metho injection. 

We are still learning through all of this what it "okay" and what is "too much" for Mia. We give her Zofran one hour before the shot and 4-6 hours after. She gets very nauseous and very pale afterwards....and into the next day. Sometimes, it carries over to Sunday. Some days, she sleeps about three hours in the afternoon. And, she constantly has to go to the bathroom. She is extremely tired and pale during the week and her appetite is poor, but by Thursday she is on the "upswing" and starting to feel like herself again. And then, she gets a shot on Friday, and we start the whole cycle over again.

Mia has only thrown up once in the middle of the night (a few days after her third mtx injection - 11/20). She had blood work done after Week Two that showed she is anemic and her urine test showed there are white and red blood cells in her urine. So, they want us to repeat it. Rheum said it could be from the increased Indocin she takes daily (12 mls). If so, they may want to reduce it....but won't know until they see repeat urine test.

Her sed rate is still very high - was at 41 when she started mtx and has only dropped two points. It needs to be below 8). I asked the rheumatologist how long it should take for the mtx to "kick in" and she said, "Her sed rate should drop within 1-2 months. If it does not, then we will want to add in a biologic like Humira or Enbrel, in addition to Methotrexate, to reduce the inflammation throughout her body." 

So, that is where we are at....one month in. We are still overcoming...little by little...small victories along the way! 

Through the "yuck" of all of this, we are trying to keep Mia's life as normal as possible. This past weekend, she walked in her very first parade, representing her dance school. When I asked her that morning, "Are you SURE you feel okay to walk in the parade?" she told me, "Yes! Mom, I am going to push through the pain!" She's a trooper! When we saw her walk by, Jay and I were the proudest parents on the street as we cheered our daughter on. It was a victory, indeed! Granted, I did have to give her a piggyback ride near the end because her ankle and left knee were hurting her and that night she went to bed with two heated rice socks on her joints (left knee and left elbow), but she made it! She did it! It was a wonderful day for all of us!

While things are not how WE planned for it to be, we are still overcoming...each and every day! 

"He gives power to the faint and weary, and to him who has no might He increases strength [causing it to multiply and making it to abound]. - Isaiah 40:29 (AMP)

Methotrexate Injection: #1

We started methotrexate injections today with Mia. While she went in, strong and brave, ready for the first dose with her Buzzy bag in-hand....

...it did not turn out as pleasant as we hoped for. As much as we tried for weeks to prepare her, she still had anxiety over the shot (she didn't like the lime green fluid that would be going into her leg) and cried...hard.

But, we got it in - 10mls (.4mg). The nurse at the pediatrician's office, showed us how to draw up the medicine and then inject it into her leg, alternating legs each week.

She had the shot around 1:00 p.m. Tonight, she isn't feel that great and went to bed early.

We do another injection next Friday night and then wait for a "green light" from her rheumatologist (so she can check her liver and kidney levels) before we continue weekly injections. Mia's sedimentation rate right now is high - it is at 41 and should be below 8. Hopefully, with this new medicine and continued diet, we can get it back down.

Day by day...moment by moment....we shall overcome.