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, August 2, 2012

One Family and two Surgeries today!

Today was a long day for our family as we had two surgeries to worry about and as it goes for tonight it looks like both were successful.


Ron went in this morning for a surgery to correct hopefully the complications he has been dealing with since his Prostrate Surgery in December 2011. 
Dr. Biggers told me after the surgery that he was confident it was a success as he was able to clear the bladder and remove more of the Prostate, plus inject steroids into the scar tissue that has been causing so many of Ron's problems.
This surgery was different on many levels as we both like Dr. Biggers a lot who is older but has a wonderful sense of dry humor. This man just had a tumor removed last week from his pituitary gland and was already back in surgery, not knowing at this point if his tumor is benign or not.
Ron came out of surgery very well and when I saw him in post op he was already sitting up drinking coffee. So I am hoping this is a good sign all around.


Now the next surgery involved my Brother In-Law Rainer. He went in this morning for a knee replacement in Germany and the news I got from my sister was that he was able to wiggle his toes slightly. This is a big deal when they saw off your leg in two places, put in a replacement knee and then have to reattach nerves, muscles etc etc. He will be in the Hospital for at least 10 days if not longer and then will move into a Rehab Clinic for several weeks.
We are hoping all goes well and that I can tempt him with some hikes in the coming years!!!


Now as to JM news and Connor. I have no results yet on his blood work, HOWEVER ... when we came home today at 4:45 pm I was told by my Mom that Michelle had called several times today to talk to me. My precious boys answered the phone each time and also wrote down her phone number but failed to tell me, call me or give Michelle my Cell Phone Number. Now she did send an e-mail before she went home and it only stated that she needed to talk to me about the results.
Now I am trying to not think to much about it but would have loved if the msg said all was fine and she will touch base with me :) Oh the worry bug we Mom's carry around :)
Now as to Connor, he has not had any other episode as the one Saturday night but he has had diarrhea for a couple of days now, complained about some pain in his upper body and is hardly able to put his heels down, so tip toeing is still the way he is moving since Saturday. 


NOW ... having written all this and finished my blog I went to look at a new message in my inbox and vola here was an e-mail from our loved Michelle.
This is what she wrote:


  Unfortunately, Connor's labs showed some increase in his CK and LDH although his Aldolase is normal.  His labs and symptoms are a little puzzling and may be reflective of viral illness. However, we want to be very careful with any symptoms of weakness with increased lab tests. I discussed his labs with Dr. Soep who made the following recommendations:

1. Increase his Orapred to 2ml by mouth one time a day
2. Increase methotrexate to 22.5mg (9 tablets) by mouth one time a week
3. Follow-up in our clinic in the next two weeks.  

1. Increase his Orapred to 2ml by mouth one time a day
2. Increase methotrexate to 22.5mg (9 tablets) by mouth one time a week
3. Follow-up in our clinic in the next two weeks.  



So I can go to bed now with a plan and we will be seeing Michelle and Dr. Soep on Aug 15 at noon!


Oh in case I have not mentioned this before but all summer long our dumplings have been studying other countries of their choosing. Some weeks they chose countries they wanted to know more about and last week they spun the globe with eyes closed and chose that way. So far we have studies, Brazil, Spain, Sweden, France, Madagascar, Egypt and this week we have Jamaica and Italy on the Menu :) I say Menu because along with their studies they also cook us a meal each week from the country they studied .... So I want to say that we are very proud of our boys on their curiosity for other cultures and their commitment to learn even during the summer :)


I want to Thank our Family and Friends for checking in all day today and please know that once again it meant a lot.






























Love and Hugs,
and updates will come as soon as I have more news :)


R A C A

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