Our Journey thru JDM and Life!: A New Day :)

Timeline from first symptom to diagnosis

Our son Connor was diagnosed with JDM in January of 2010 and here is a bit of a timeline to show you how this diagnosis was reached...

Towards the end of November 2009, Connor mentioned some pain in his right foot. We found a Plantar Wart and began treating it. We went on vacation in Germany were he mentioned a pain in his knee's, to feeling in his own words, pain 'inside his legs'. By the time we got home on December 9, he needed to be carried almost everywhere. By the end of December he was unable to feed himself, dress himself, sit up or down, lay down and of course walk. Here is a list of tests he went through between December 10 to December 28, 2009

X-ray of his Hips

MRI of his spine

X-ray of his chest

CAT Scan of his brain

CAT Scan of his chest

MRI of his chest

MRI of his hips

Numerous Blood Work

Spinal Tap

and we finished with a Muscle Biopsy

There were many speculations of what might be causing Connor so much pain and one of them was Gullian Barre Syndrom (GBS) due to his first symptoms showing up within a few days of his H1N1 Flu Shot.

The final Diagnosis came on January 11, 2010

-Juvenile Dermatomyositis (JDM)-

Friday, June 18, 2010

A New Day :)

So I have been thinking again last night that by now our boys have been to 5 Hospitals in 6 years (well actually 6 if you count the 4 month stay at the Hospital in Khabarovsk, Russia when they were born premature)

I think I should be allowed to write a preview of the following Hospitals and what we think of them:

*Children's Hospital in Dallas, TX (Tethered Spinal Cord Surgeries for C & A - 6 days each)

*Children's Memorial in Chicago, IL (JDM - 21 days)

*The Children's Hospital in Denver, CO (JDM - 31 days)

*Pikes Peak Regional Woodland Park, CO - ER (2 visits)

*Memorial Hospital in Colorado Springs, CO - ER

Out of those five, three would get excellent marks, one gets good marks and one I would without a blink give an F (Failed). Those who have been along our journey will no which one this is :)

Now that we have what happened yesterday behind us I am now moving forward to our next goal which will be getting Connor back into Therapy. I admit that having a break was nice for about one week but we are now at over four weeks with no therapy at all and I know for sure that it is showing on Connor. Just lately he is asking more and more again to sit in the wheel chair, he is telling us his knee's are hurting and he looks and walks more stiff with a slight limping to it. Michelle told me at our call yesterday that she talked to Memorial and that they requested a few more papers and that she will fax it to them ... so now i just hope they will call is next week! The last think I want now is for us to move backwards ....

I did give Connor his Solumedrol Infusion this morning and just about all day he complained about his muscles burning in his legs. He also was a bit more grouchy as usual and by 7 PM he was asleep on the sofa. I so hope this is not a omen that the tapering of the Steroids was to soon.

I wish all of you a fun weekend!

Hugs,

R A C A