GI procedures complete

Trevor had a colonoscopy and endoscopy on Thursday, May 24th. Dr. Kaiser does not think he has IBD. The biopsy will be back on Tuesday to confirm but he was very optimistic. So most likely, Trevor will begin Enbrel. I am ready for him to get some relief from all the pain!!
In the meantime, I have transferred all of Trevor's prescriptions to Walgreens. We used Publix but there are some communication problems with them and doctors. I cannot deal with the time or energy it was taking to get his prescriptions refilled. I hope Walgreens works better for us. As always, more to come.

Along comes the Holland Story!

Right after I wrote the last post, feeling sad and sorry, I read a post on an arthritis group that said that everyone needed to read the Holland Story. I did and Wow. I have bookmarked it to read over and over. I'm not quite enjoying Holland but it gives me hope that one day I will. Google the Holland Story to read it!

Just when I think things can't get worse!

Trevor saw the GI doctor on Monday ( Dr. Kaiser-@ All Children's) Three different tests show inflammation in his stomach and intestines. He will have an endoscopy and colonoscopy on Thursday, May 24th. I'm scared. Scared of the tests, scared of the results and scared of the not knowing. Ever since the appointment, he has had stomach pain. He has had to leave school and sleep most of the day in class one day! They didn't do anything at the appointment except an examine. If he has Inflammatory Bowel Disease, he will have to go on Remlicade (infusions once a month at Shands). If he does not, he will go on Enbrel. Sounds great, right.....I either get to chase my 12 year old around the house to give him a shot or travel 2 1/2 hours once a month to sit 2 hours and watch him have poison injected into him. I just pray one day he goes into remission.
One a good note, we went to the Arthritis Walk in Orlando. It was fun and I think Trevor really felt the support he has around him.
I really wish that people knew this was more than just a Tylenol arthritis commercial.
I am applying for a scholarship to attend the National JA Conference in St. Louis. I am hoping to learn more.

Trevor meets his idol

It is always something...

We went back to Shands for our second appointment. We figured we would be told Trevor would be put on Enbrel or Humira and be on our way. We knew talking Trevor into these meds would be difficult but knew this would be our fate. No....one of Trevor's tests showed inflammation in his bowel. Normal range is 0-120. Trevor was a 120. Dr. Sukesh said he considered this high. He made the referral to a pediatric GI. He said he cannot determine what medication to put him on until we determine if he has Colitis or Crohn's. If he does have inflammatory bowel disease, he will have to have infusions once a month at Shands. If he does not, he will go in Enbrel. Trevor had told Dr. Sukesh that the naproxen was not working. He put him on Celebrex.

We have an appointment with Dr. Kaiser on May14th. He will probably schedule a scope and colonoscopy.

Trevor has only been on Celebrex for a couple days but it seems to be helping.

Today, he is having a bad day. There's always tomorrow!

The Arthritis walk is in a couple weeks and we are excited about that. We hope Trevor can get to meet some other children with JA.

Also on a happy note...he got into Camp Boggy. It is a free camp for children with JA with doctors and nurses that stay 24 hours. They will give injections and all other mess to the children!