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

Wednesday, February 12, 2014

Make that times 2: Right side tipial derotational osteotomy medial calcaneal slide Evans lengthening.

Since our life is not interesting enough, the medical world thought they make it even more interesting for us.
Today I had a long talk with the boys Physical Therapist  Miss Allison, who when I informed her that Connor was receiving the above mentioned surgery in April, right away asked me about Alexander's surgery date.
Well, I told her that the Doctor said we should give Therapy a try for another three months. She said she would talk to the Doctor but her assessment after 3 months of therapy is that the issues will not be able to be corrected by therapy alone.
As if our youngest had an idea about those kind of news he actually got sick on the drive to PT this am. He had to throw up and Connor being the supportive brother he is said for him to lay back and relax as we were on our way to the Hospital anyway ;)
By the time we got home there was a voice mail from the Hospital and it said that the Doctor looked over the x-rays again and compared Connor's and Alexander's and he agrees that Alexander needs the surgery as well. So they will try to schedule them for the same day if possible. Twins since Birth, twins with the Tethered Spinal Cord Syndrome and now twins in Casts in a bit under 2 months.

They both have been through a lot but this will be the first time they will be having surgeries at the same time and I was grateful to hear that my Mom will be flying in for the boys Birthday in April and hence will be here for the surgeries as well!

The boys are fighters and will get through this Spring and Summer with feet's in casts, I am not worried about them getting through this at all, I am just a Mom who hates them going through pain. So my wish will be that this will be as painless a journey as possible and that by fall and winter they be back to running and skiing or snowboarding.

Until April we will try to be on the go and as active as possible as I am guessing we will be laying low come April……

Hugs,

R A C A


1 comment:

  1. Anke, I am so sorry that Alexander has to go through this surgery as well. I will keep you all in my thoughts and prayers. <3 Hugs <3

    ReplyDelete