A Child with Colitis, Juvenile Arthritis And Uveitis

Intro: gavin ulcerative colitis

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

Medications:

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.




Ulcerative Colitis Tips


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Uveitis

4 Responses to A Child with Colitis, Juvenile Arthritis And Uveitis

  1. Helen July 20, 2011 at 12:08 pm #

    OMG that poor child! And you as his parents it must be heart breaking to see him go through all that! I was diagnosed with UC @ 22 and this year aged 28 with arthritis I know the pain of both can be so awful and that is dealing with it as an adult! I really don’t know what to say… Your son sounds incredibly strong!!! Can’t believe he tells you he is okay! Love it! He is no doubt remarkably grown up for his young age can you blame him all his been through and he isn’t even 7 yet! I was feeling a bit sorry for myself earlier as my arthritis is not under control and I am in a lot of pain but after reading Gavin’s story I have given myself a kick up the butt and shook off the sorry feeling! Sending a big hug to your really strong son! May he find remission and may it last a life time with all 3 of his illnesses! Can I please ask you what he takes for the arthritis and what has worked the best? While my UC is under control with Humira, steroids and salazopyrin. My arthritis is currently being kept at bay with morphine and even that isn’t working… I am at my wits end and would appreciate any advice you may have to offer? Thanks for sharing your story! Gavin is one tough cookie!

  2. Yoli July 20, 2011 at 2:08 pm #

    GAVIN U ROCK DUDE!!!! UR SO AWSOME! I can’t even imagine how brave lil Gavin is. My son is 6 and I would be devestated as a parent watching him go through this. I have had UC for 15 years along with arthritis and fibromyalgia. It literally KICKS MY BUTT. Mom and dad, my heart goes out to you. I say to myself all the time, I would rather have this than my son. It’s sooo amazing how kids react. So innocent and brave. I truely commend and admire you as parents, it must be so hard to feel helpess. My prayers are with your family. I hope we can all help find a cure for this.

  3. Elisa July 20, 2011 at 4:13 pm #

    God Bless Gavin! I’m a 43 year old baby and knowing that a child is out there experiencing symptoms that are so painful encourages me to continue on with treatment or SCD or anything I can try. I’ll be praying for you and your family.

  4. Heather July 20, 2011 at 4:14 pm #

    What a brave little boy you have! Be well Gavin!!!!

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