Update

Just a little update. Jackson has made quite a improvement in the right knee since the joint injection! The swelling has gone way down and it only takes about 10 minutes in the morning for him to walk on it! Compared to 2 hours before he could walk, which is a huge improvement. We have done 2 weeks of the methotreaxte injections at home, that has been going well. He lays down on the couch really good for me and doesn't even cry! He is such a trooper with all the poking and prodding. We are still weaning off the steriod eye drops so I will be curious on what the opthamologist has to say on the next appt. He still takes the Naproxen 2x a day also, which the plan is he will be on that long term or til he goes into remission. The one toe has gone down slightly in size but is still swollen. All in all he seems to be finally improving. It feels like we have been battling this for months but it has only been about 3 months. I just wonder how long Jackson has had this disease and we didn't even know it!
Jackson has been really sick with a cold the last week and can't seem to kick it so we might be making a visit to the Ped here within the next week if he doesn't get better. I kinda figured with having a immune system proplem plus being on a immunosupprsant drug would make for him catching every single bug but I guess the payoff to get in remission will be worth it!
August will be a busy month with 3 appts schuduled already. Unfortuntaly we couldn't get both the doctors at the childrens hospital schduled in the same day so I have to make the drive twice in two weeks. And Mike is out of PTO time so I will be doing it all alone! Jackson sees the Peds Rheumatolgist on August 12th and the Peds Opthlamolgist on the 18th and his Ped here on the 25th! Busy month!
Thanks for checking in I will update again in a couple of weeks after the next appt.
SARA

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!
Sara