Its been awhile since I have updated. A couple days before Christmas Jackson had a ct scan with contrast of the brain, neck and chest. His neurologist said the scan was very reassuring that everything looks good. He did not find any calcium or plaque in the neck or around the heart. He still has the spots in the falx of his brain but they now think it is nothing of concern and could be from a old healed injury. He said it is most definitely not from the methotrexate. At this point we are not going to keep testing but will get another ct scan in a year so December of this year. He is still going to continue to see Jackson to help with the headaches that he says are migraines. At this point we are keeping track of the headaches and will see Dr. Raymound in March and talk about where to proceed with helping Jackson's migraines.
We have been having some major issues with Jackson's methotrexate injections. They make him so sick that all the next day after his shot he vomits and dry heaves. He does take Zofran but it is not helping. Even after taking Zofran he still gets nauseated and vomits. So because he knows how sick this med makes him it is a battle getting him to even let me do that shot. I hate it so much. It breaks my heart to listen to him cry and plead no Mom please don't! We have a appointment Monday to see Dr. Vehe (rhemotolgy) and infusion so I will be talking to Dr. Vehe regaurding this issue.
Other than the methotrexate and the headaches Jackson is doing fairly well. He loves school and is doing so well this despite missing about 12/15 days already this year.
I have since finished my 30 days of meds for lyme disease. Wish I could say I was 100% back to normal but I am not. While I feel much better than I did in December my knee is still sore. It is a little sore and stiff throughout the day but the worst pain is at night when I try to sleep. There is still some slight swelling also. My neck has been sore often and on again also. I see the doctor again Febuary 26th but that is a ways out yet. Just thinking back to when my pain was at its worst and the constant daily pain I have now breaks my heart to know my child has dealt with this for 4 years now. I remember when his knee was at its worst and so swollen he was just 2 years old! I consider myself to have a pretty high tolerance for pain (thus the reason I dealt with my pain so long before seeing a doctor) so to imagine that it had me up in the middle of the night sobbing is so heartbreaking to know my child has to endure that pain. Between the ages 2 and 3 I spent many nights awake with Jackson because he couldn't sleep because of his arthritis. Remembering the mornings when he couldn't get out of bed without being carried or when he would crawl to get around when the pain was too bad to walk. Awful disease that he will forever live with!
1 year ago