Sunday, October 27, 2013

Fast Forward

     We are moving forward, Fast Forward in my opinion.
     Ophthalmology appointment went well. My girl was clean and has to be seen in six months. My boy was clean as well and he needs to be seen in a year. The reason my girl needs to have her eyes checked 2 times a year is because she uses plaquenil (or  hydroxychloroquine). This drug can cause toxicity in the eye, especially with long term use.
     My son was approved by my insurance for Humira. That surprised me greatly since my daughter was not approved and receives her shots through the manufacturer’s compassionate program; Progress. After some investigating I found out the reason for this was that their initial diagnosis differs. My daughter is diagnosed with oligoarticular JIA with polyarticular course (oglio: up to 4 joint affected in the initial 4-6months) and my son with polyarticular JIA(5 or more joints affected). What it comes down to is that they suffer from the same disease; my daughter does not qualify and my son does….weird or what. I’m not complaining though, either our insurance or Progress is picking up the bill for this costly drug.
     Drug was ordered and training booked. The nurse came to our house, same lady that trained my daughter! My son is trained for an auto injector because his hands are pretty bad. Where the syringes are perfect for my girl (she likes to go slow, take her time!), the injector pen is perfect for my boy! Clean, aim, shoot, done in 10 seconds! I was a bit apprehensive about it but my son was a rock star. He just did it, no problem. I am not sure if I could ever give myself an injection. You do if you have to, of course, but honestly, it takes a lot of courage. Pretty proud of both my kiddos!
     So….I now have two children using Humira. I hope it gives the same relief to my son as it is giving my daughter. The other day he asked how long it would take for the Humira to kick in because he wanted his fingers to go back to normal. Time will tell.
     What took about 7 years for my daughter, happened within 6 months for my son. That just shows how fast research and practice are progressing. Just hoping there will actually be a cure one day, which would be totally amazing.

sadly two of them are mine.

     Here’s to hoping!

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