Tuesday, July 13, 2010

New Meds again:(

Yesterday was a long busy day at the childrens hospital. We had 3 appts, one with the Ped Rheumatologist, one with the Ped Opthalmogist, and one in the Peds sedation unit for a injection in the knee. Jackson did very well:) The injection was steriods because the knee was so big and caused a lot of pain and the meds were not doing anything for it. He was sedated when they did because of his age and because the have to the big needle all the way under the knee cap and into the joint. They allowed Mike and I to stay in the room and watch, it looked very painful! He did get some Fentyl for pain which seemed to help quite a bit, he was back up walking within a couple a hours. Dr. Vehe (rheumatolgist) thought they would probably inject his one toe that is really big but decided that it wouldn't help because that one isn't just full of fluid in the joint its in the tendon too, the same with the left ankle. Jackson did seem to be very restless last night and had me up at 1am so I am very tired today. Not sure if he was hurting or what. As of tonight though I have seen a big difference in the size of his knee already which is great!
There were still cells in his left eye which was very disapointing since we have been on the steriod eye drops for over 2 months and initially they made a huge difference. So given that his joints and eye have made no progress since the last appt. they decided it was time to go right to the big drug, methotreaxte. Huge bummer for me this is a pretty strong chemotherapy drug and I was hoping to avoid this option all together. However the risks of not taking the drug are worse than taking it at this point. The benefit of methotraxte is it will help both the eye and the joints and tendons and we can start weaning off the steriod eye drops since takin to long it cause glacoma and catarats. He will still stay on the naproxen though, again I am very worried about all this meds he takes daily being hard on his body! The methotreaxte is a injection that is given every week and I get to do it at home. The nurse went thru it with me step by step and even had me give her a practice shot. I was really nervous but she claimed I did really good and she couldn't feel it. I am also worried about the methotreaxte being a immunosupprasant drug and his immune system is already compromised. I have a bad feeling he will be sick a awful lot this fall and winter. But without controlling the swelling the fluid will eat away at his bones so I guess this is the best for now. Our next appt with Dr. Bothun(Ped Opthamolgist) is Aug 18th and I have to make one for Dr. Vehe (Ped Rheumatolgist) in 4 weeks.
On good note Jackson turned 3 on the 11th! We had a big party at our house with family and friends. Mike even suprised Jackson with getting a bounce ride for all the kids! It was a gorgeous day and the little ones played all day on the bounce ride, pool, slip n slide and the swing set. He is one spoiled little boy with all the presents he got. He had a thomas the train cake. I will post pictures at a later time as my lap top crapped on me and I have to use the desk top in the mean time.
Thanks for checking in!


  1. HI Sara,
    My daughter has been on Methotrexate for 2 years & at first I was worried about it..... and yes, i am sure its been the main reason for her sniffles & adventures with other viruses, e.coli 0157:H7 & infections... HOWEVER that said.... I wouldnt change a thing because there are NO damages to her joints or eyes. All those other things were mere little hurdles we had to cross, but in the long run, there is no damage to the joints or the eyes! She bounces off the walls these days.... we are still on Methotrexate and will be for another 2 years (our plan with our team - led by uveitis specialist dr. stephen foster in cambridge @ MERSI).

    I know its scary to say "ok... we are going to do it" because I was there with you. But, its done amazing things for Charlotte, hurdles aside, I wouldnt change our decision EVER and am grateful we jumped on it as fast as we did so we could get off the steroids!

    Take care & good luck with your sweetie! His birthday sounded fun! Wait till they are healthy, I am planning Charlotte's 5th birthday right now & realized I am going all out & NUTS because she's been healthy & all is going good (took awhile to get here, but now that we are - CELEBRATE). That day will come, there are rainbows ahead!!!

  2. Thanks for input Erika. I feel a lot better after hearing someone elses personal experience with it! I don't know anyone yet who has a child with JRA except for the people I have found with blogs. Its great that your little girl is doing well and healthy! I can't wait for Jackson to get there. Thank you again for your input! And best wishes to your to your little girl!