Inspiration for this beautiful morning

This was the daily bible verse for Trevor's appointment day at Duke University.
Luke 12:6-7 () 6 Are not five sparrows sold for two pennies? And not one of them is forgotten before God. 7 Why, even the hairs of your head are all numbered. Fear not; you are of more value than many sparrows.

The Arthritis Foundation is doing some amazing things

I've donated money to many charities throughout my life and of course have embraced the Arthritis Foundation.  I must say I am very impressed with how far they have come in the two years we have been involved.  Many new medications have been introduced, much research is going on, and much much more.  Closer to my heart is a much needed website dedicated to just Juvenile Arthritis.  This is fabulous.  When parents want information, they can go to this website for answers.  It just for JA.  They don't have to weed through RA or osteoarthritis or all that other stuff. It is wonderful!

Here is the link:

      www.kidsgetarthritistoo.org

It's been a While- Quick Catch Up

I really don't have an excuse for not keeping up with this blog other than wanting to crawl into a hole to escape this life. Not that our JA life has not carried on and not that we have not continued to fight. I was determined to make this summer the summer of fighting, the summer of getting some answers, and the summer of resolve. So far, it has been none of that. It has been the summer of backsliding and starting over. This has been our first "real" JA summer. It has been pretty easy on Trevor. I don't know if it the lack of early rising, the getting up at his own pace or what but, it was much easier than those last few weeks of school! ( I did not think we were going to make it!). Here is a quick update:

   After Trevor's appointment, his stomach issues got worse.  We did not begin the Leflunomide 20 mg medicine. (New medication).  The nurse told us that would only make his stomach issues worse.  We went back to his GI doctor expecting to get another colonoscopy and endoscopy done but instead we were told that Trevor needed more fiber in his diet.  As a mother there are some things you know.  Trevor may not be the best eater but he is pretty picky and tends to eat the same things. He had not really changed anything, I knew something was going on. I don't know if it is medication or what but something.  The doctor shocked me to explain that his last colonoscopy had three biopsies done. One of the biopsies showed inflammation but he thought it was inflammation due to the arthritis not due to inflammatory bowel disease. What? How do you know this? And he added if he has inflammatory bowel disease he is on the best medication for it (Remicade) and at a very high dose to boot so he would not be having any problems. I don't understand? What if the medication is not working? No answers. I got nothing! I was told to give him 20 mg of fiber a day and come back in 3 months. Well as you can imagine lunatic Julie came out. I think I am now flagged as a crazy woman in both Trevor's pediatrician's office and rheumatologist's office. Each of them kept telling me to go to the other office.  Finally we just went to Shands. 

    On June 17th we saw Dr. Sukesh.  We realized he did not even have any of these records! He was very disappointed that Trevor did not have the tests done.  He agreed that we needed to get a new GI doctor. He made a referral to Shands and Nemours (soonest one) and see what happens. Shands appointment is August 12th.

    Needless to say we still do not have any answers.  Trevor is not having nearly the problems he did with his stomach that he was in May.  We never changed his diet. (I did tell Dr. Sukesh that). It seems to come and go.  We just have to wait and see.  Dr. Sukesh did want us to start the Leflunomide 20mg  which we did because he was on nothing and miserable. He said he was showing signs of scoliosis from adjusting his back due to the amount of pain he is in.  It will take 8 to 12 weeks to get into his system and if he does show inflammatory bowel disease (IBD) than this medicine will not work at all.

    We do leave on Saturday for a second opinion at Duke University.  We just feel we need to be sure Trevor is on the right path.  We love his doctors but just want another's opinion.

Things I have learned:

***If you see a specialist at a different facility other than your rheumatologist, they will only send medical records to your primary care physician NOT the referring doctor.  As crazy as that seems, it is true!***

(So Trevor's pediatrician has boxes of records on Trevor without really knowing what or why and his rheumatologist who made these referrals have none of them).