When we tell people that our 6 year old son has Ulcerative Colitis, Juvenile Arthritis and Uveitis they are blown away. We hate seeing him suffering in pain! No child should have to know pain and suffering and live their lives in and out of the hospital.
Our Son’s Story:
When Gavin was 21 months old he was diagnosed with Juvenile Arthritis. The first 4 years were as expected…pain, swelling, lots of meds, shots, infusions, physical therapy, tests, surgeries, hospital admissions, infections. They were, what we thought, the hardest years of his and our lives (ugh)….then he was diagnosed with Ulcerative Colitis.
Gavin was on Remicade infusions for about 3 years and this past November we stopped them to start Actemra infusions because the Uveitis was out of control in his eyes and we had to save his eye sight. The whole month of December Gavin was so sick. Didn’t know if it was a reaction to the new meds or what. He was going to the bathroom 20 times a day, throwing up, awful stomach pains, no appetite. Finally after numerous pediatrician visits, an ER visit on Christmas morning, a loss of 10 lbs and a month of complaining to his Rheumatologist…she admitted him.
The Dr’s and nurses started right away and didn’t stop until they got their answers, feeding tube put in, ultra sounds, upper GI scope, colonoscopy, contrast. Not what any 5 year old should have to endure!!! After days of tests they told us he has severe Ulcerative Colitis. We were happy and sad at the same time. Happy that we had a diagnosis and that he didn’t have cancer but sad that there was another diagnosis with no cure that he would have to live with.
It has been 6 months since his diagnosis and he is doing much better. He hasn’t had any problems with his UC once he was put on the right meds. We have an AMAZING child!!! He is so much stronger and wiser for his years and tells ME that he will be ok! He has an amazing Spirit and is always happy and cracking jokes when he isn’t in pain from his JA. He is our HERO!!!
You can read more about Gavin’s story here: http://gavinsstorylivingwithja.blogspot.com
Gavin has been on a lot of meds since he was 21 months old to control his JA, UC & Uveitis…
Naproxen, Prednisolone, Methotrexate, Humeria, Enbrel, Leucovorian, Sulfasilazine, Zantac, Iron, Calcium, Remicade, Solumedrol, IVIG, Rituxan, Actemra and numerous eye drops and anitbiotics.