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)-

Hope

Hope

Thursday, October 28, 2010

Part 2 of our trip to TCH

As promised here is the follow up to our stay at TCH today. I had a conversation with Ron right before Connor finished up his IVIG and we concluded that the 8 to 10 weeks of castings on Connor's feet and legs will be a challenge for us in the coming two months due to him being all excited about the up-coming Halloween Weekend, our up-coming trip to D.C in two weeks ending with our trip to Germany in December. Halloween we decided was not that important and can be done in his wheel chair as well as our trip to D.C. but neither of us want to travel to Germany with Connor wearing casts.
I went and saw Holly and told her about our worries and she went and got Dr. Biffel to talk to us again. Luckily Dr. Biffel told us that Connor has been dealing with this for so long that two more months of holding off will not make that much of an impact and that we should call Holly when we come back from Germany and have the casts put on then. Trust me when I say we were all happy to hear this! Connor especially because he was very worried about his future Trick or Treating.... :) but he is not off the hook at all because as soon as we got home I put on his Boots for his feet and told him this will be it every time we are home and through the nights. He was once again not happy but then what has been pleasant about his journey with JDM?

Now there is the part that is still up in the open and that is the fact if the Casting is not working the next step will be surgery for Connor. Now I have no idea what this entails as of yet and have never heard from anyone that had this done. I guess I will put this aside until we know if the cast on his legs will work....

I also have to make an appointment with a Pediatric Dentist who has Orthopedics experience as well, thanks to Connor growing a tooth way behind his baby tooth on the bottom. It is not just right behind it but pretty far back. Dr. Soep looked at it and said that she wants to have a Dentist look at it but needs him to talk to her before he does anything.

We are all happy to be home now and we hope that we can catch up on some work and school tomorrow. We tried to do some school work at the Hospital but Connor was feeling so sick and tired that he did not even last through one Video and Alexander did okay but was more unfocused then at home. I on the other hand have to hunt down some more Medical Records for the boys.
We truly are glad to go for the Twin Research Study but I am glad when the hunt for Medical Records is over. I just don't understand why it is so difficult to get Records or why some Medical Offices don't like to cooperate as well. It's not like we don't pay for them. So far it cost us close to $300.00 to get them...

Wishing all of you a fun and safe Halloween Weekend! It is our boys favorite Holiday, and this year I am being treated to a Haunted House called the 13th floor in Denver, CO, thanks to my friend Jennie who is the fearless one of the two of us.

Most likely I will be back to posting on Monday :)

Hugs,

R A C A
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1 comment:

  1. SusanOctober 28, 2010 at 6:14 PM

    Well, I am glad you can wait until after your trips for the casts to be put on. I can only imagine what a relief that is. I know first hand how hard it is to travel with a child in a wheelchair.

    I do hope Connor is feeling better soon. I don't like to see any of our kids feeling unwell!!

    I am glad that Alexander is getting to do Judo. He does need something for himself after all.

    Thanks for the update :)

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