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

Friday, January 29, 2010

Day 2 at CMH

Last night Connor did a lot of coughing and around 8 PM they included to having his vitals taken every 4 hours to have his oxygen measured as well. Connor went to sleep around 9 PM and around 9:30 PM another blood sample was taken to look at his oxygen levels in addition to the other readings. Connor slept very restlessly and cough continuously. Part of the worry due to his problems swallowing would be him getting pneumonia.

Today we started the day running at 7:30 AM. Connor had an MRI of his Hips and muscles. We made it back in time for more blood-work, Physical Therapy assessment - which won't happen until they can get him pain free.He saw the Respiratory Doctor again, had an Eye exam, and most importantly met with Dr. Pachman who ordered him right away on purred food. He went and had a lung capacity test, we talked to a Nutritionist and he is off now to have a swallow test done. All this and it is just 1:40 PM......

Connor is still taking it all in stride and only complained about the change in food... he does not like eating purred Waffles with Syrup :)

Alexander on the other hand has been Mr. Personality and even fell in love with one of Dr. Pachmans Doctors, who is right now giving Alexander a tour of the hospital which includes lunch.

Also we moved out of the Beldin Stratfort (sp) Hotel and are now moved into the Kohl's House which houses families of Transplant patients. They had room for us and Ron who moved our luggage over said it was beautiful and is just one block from the Hospital.

Dr. Pachman said the reason for all those tests right now is due to the weekend being quit and they want to get Connor started on a treatment. So she things we will have Lot's of down time this weekend and then get back to work of Monday. So not sure how long our stay will be but as always will let you all know when we find out more.

So now I do have another up date because it is 8:30 PM and Alexander and I are at the Kohl's House which seem's heavenly right now. Connor had a couple more tests this afternoon including a n Echo Cardiograph and a visit from the Dentist. He also had his blood pressure and vitals taken every 15 min for one hour.

For my medical friends here is a run down of Connor's medication right now:
1) Calcium Tums 500 mg 2x daily
2) Tylanol with Codeine 120-12mg/5 ml - give 12 mg every 6 hours as needed
3) Calciferol 400 Units 2x daily
4) Folic Acid 1 mg daily
5) Solumedrol 560 mg daily
6) Protonex 19 mg 2 x daily
7) Methotrexate 12 mg once tomorrow (Saturday)

Hope you are all doing well! and Alexander and I are off to bed since we are ready to fall over while my lovely husband is taking over the nights shift with Connor.

Hugs,
R A C A
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