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

Tuesday, January 8, 2013

Influenza and Chronic Cough ....

So the Influenza has decided to visit our house this year... I admit it came unexpected as we went in to see the boys Pediatrician yesterday afternoon as a check up on the chronic cough Connor is having and also a new assessment on Alexander's ADHD Medication.

We arrived for the 4 pm Appointment and it was very unusually for us in the form that we had to wait for almost 45 minutes to see Dr. Maynard.
The boys each were weight and measured and the Nurse actually stepped back a step when she took Connor's temperature which came in at 103.2'F.
Now you might think how I could miss this but truly I had no idea he was running such a high temp and neither did Connor act as if he was sick beside the constant coughing.
Connor has had a low grade temp on and off now for over a month. It would stay around 100 most of the time but 103 was definitely a surprise.

Dr. Maynard right away order the Flu Test (Nassal Swipe) and Connor was awared the Number 18 as in the 18th child Dr. Maynard diagnosed with Influenza just yesterday alone!
The whole Appointment lasted until 5:45 pm and we made it up to WP a bit after 6 pm. I went to Walgreens who was out of the Tamiflu, from there we rushed to Safeway who was also out of the Tamiflu. My last stop was at Walmart and to my happy surprise they had one pack left!!!! Now I needed to fill two packs but this got us started and I was happy. Now they said it would take about 45 minutes to fill the order so we went to get a bite to eat. This is the one huge disadvantage about living outside of a town. It takes to much time to run home and back that you are stuck to wait it out. It was finally filled by 7:30 pm and we made it home by 8:10 pm. Both boys went straight to bed and I got busy online to e-mail with Dr. Soep and inform her about the turn of Events.
We emailed back and forth and Thanks to Dr. Soep she contacted Dr. Stillwell so we could move Connor's Pulmonary Appointment, which was scheduled for today at noon, back for two more weeks to the 24th.
Everyone agrees, Dr. Maynard, Dr. Soep and Dr. Stillwell, that the Chronic Cough is unrelated to the Flu but of course it would hinder Dr. Stillwell in making an assessment on a child with the Flu, not to mention he is considered very contagious so we do not want to expose and take Connor out right now.

This sadly meant my txting with Ron and us calling off our trip to Texas today as well.
We were all so looking forward to watching the Wedding of Rebekah and Damone and being a part of it. Connor and Alexander were very heartbroken about this but in all honesty this is not a gift we want to bring to fellow Travelers and a Wedding Party ... I am sure they don't need to be exposed to the Flu. I leave that to others to pass along and don't want the blame of this one ;)

So we are hunkered down now here at home. Connor is set up in a 'Sick Room' in our Guest Bedroom and is having a big supply of Water and Netflix Documentaries. I might have made a mistake to hand him a Bell as he rings it about every 15 minutes - lol
Alexander was upset that we would be moving on with school but I told him his pay off for not getting sick will be his Snow Boarding on Friday. That made him realize he rather stay healthy if we can .... I just need to figure out a way now to get that other script dropped off and another round of Tamiflu Ordered. Technology is not as advanced as I wish as I would love to do this all from home without having to drag everyone into the car just to drop off some paper :(

A HUGE THANK YOU to my wonderful friend Monica Forss!!! She was an Angel in listening to my txting/venting all afternoon :) It is truly great to have friends that just listen but also help you or in her case gave me a huge smile when I first told her Connor was diagnosed with the Flu. The first word she txted was exactly how I felt but would not say and that made me smile!!!


Hugs,
and hope for those of you that are not sick yet that it stays that way!!!!

R A C A





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