older emails on Jeremy

I decided to include these - in case anyone missed it the first time around...

Sent: Thursday, May 01, 2008 7:03 AM
Subject: Update on Jeremy

After a long day at Children's Rheumatology yesterday, we finally have a diagnosis for what is causing the stiffness in Jeremy's feet, legs, arms and hands.

We have been to a Pediatrist, Pediatrician, Orthopedist, Neurologist (had an MRI), been back to the Orthopedist and back to the Neurologist. Our wonderful Orthopedist, Dr. Jinguji, with Children's is the doctor that suggested Scleroderma and got us the appointment with Children's Rheumatology. It is a very rare disease, and even more rare in children. I am assured that the Doctors at Childrens are the best and we are lucky to have the diagnosis so quickly as often kids are misdiagnosed for years. There are some links below where you can read more about it.

Yesterday Jeremy had a bunch of tests, (breathing, Echo, blood, urine, x-rays) and my mom will be taking him back Monday for a swallow test, redo the breathing, and he needs a biopsy and CT scan still. They are trying to determine which form of the disease he has:
Localized - not involving internal body systems. Localized is much more common in children than adults or Systemic - involving internal systems. Systemic is much less frequent in children. The hope and prayer is that it is not Systemic, which is why we have to do so many tests to make sure it is not effecting his internal organs. Once we determine which type he has, we will begin different med's to help soften the stiffness.

Thank you for everyone's thoughts and prayers as we continue on this journey. Jeremy's friends have been great to him (& their parents to me) and his baseball team has continued to let him play and encourage him, even though it is very difficult for him to play.

I will keep everyone posted.

Carlanna



Sent: Monday, May 19, 2008
Update on Jeremy - Part 2

Well, we have some GREAT news to pass along and are eternally grateful for all of your thoughts and prayers - They are working - Keep the prayers coming!!

As some of you know, Jeremy had a Biopsy on his leg on Friday, where they took out a piece of his leg and examined at it. This was the last test he had, after the battery of tests he's done in the past few weeks at Childrens. We had a meeting with the Rhumatologists at Children's today, and after looking at the Biopsy, they believe that this IS NOT Scleroderma, but rather Eosinophilic Fasciitis. (and I just learned how to say "Scleroderma" now I have to figure this one out) They say this is great news, as Eosinophilic Fasciitis (EF) is possibly curable, and more easily treatable than Scleroderma, as in, Jeremy will likely respond better to the meds than if this was Scleroderma. Jeremy will be on prednisone and methotrexate for at least a year, and then will need to be symptom free for one year in order to be determined, "cured". (We hear the prednisone will make him hungry and cause him to eat like a horse - this w ill be a big change for him ) The doctors believe we should see a noticeable improvement in his walking and mobility in 6-8 weeks. He will also be starting physical therapy soon. They have also strongly recommended we get a hot tub - so that's Joe's project to work on.

Again, thank you for all of your prayers, our family is eternally grateful. Please continue to keep Jeremy in your prayers. I know the news and concern for Jeremy has spread, please pass this along to people you think should know.

Carlanna, Joe & Jeremy