Our Journey thru JDM and Life!: JDM musings from Connor :)

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)-

Thursday, March 8, 2012

JDM musings from Connor :)

Yesterday was Connor's weekly Methrotrxate Day and today we headed down to C-Springs to the Children's Infusion Center for Cancer and Blood Disorders for his monthly Port Flush and Blood work.

Connor did really well with all of the above but for some strange reason this morning when I was in the kitchen cleaning up and he was a few feet away taking his medications he stopped and looked at me. I asked him what was wrong and he said he so dislikes taking all those medications. I said I feel for him and it is no fun at all. Then he kind of shocked me by replying after a couple of minutes that he has a lot to be grateful for when it comes to having JDM. He said if it wasn't for him being so sick he would never have met Grant and Evan and how much he loves them. He said he would not know Dr. Curran and Stan the Man ;) or Dr. Soep. Of course he said he loved the Disney Cruise which would not have happened this way if it wasn't for JDM.

I for one LOVED to see his brain work this way as we always talk about looking for the bright side but to all he has been through it is not always a natural reaction to things. So for him to mention all of this was truly a gift and a great reminder for myself.

So this post if for my oldest son who has been so brave in the past and had to face so many challenges but who's mind is once again looking for the brighter side. He truly is an old soul in many ways and I love seeing some wisdom come through!

Hugs,

R A C A

3 comments:

KLPMillerMarch 8, 2012 at 7:13 PM
Aww! This is so sweet, and so encouraging! We often say the same things around here. Always trying to find the silver lining....
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SusanMarch 8, 2012 at 7:32 PM
Anke,

You have a special young man there!!! It is wonderful to hear that he sees the bright side to a disease that has done so much to him. He truly is an amazing young man!!!
I love the huge smile in his picture as well :)

Hugs to you all,
Susan and Dominic
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Vicki C.March 9, 2012 at 6:14 AM
Anke, he is a wonderful boy! Actually, they both are! You and Ron are doing a wonderful job raising them and it really shows. You have so much to be proud of. :)
Love you!
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Medication and Treatments as of January 2013

Daily Medications:

2 Calcium Carbonates (Tums)

Nexium 10 mg (for possible Acid Reflux Cough - Dr. Youngs Office)

X - Removed as of Jan 24 2013 - 1 800 mcg Folic Acid

2x 7.2 ml Naproxen

1 ml since March 2013, 1.5 ml Prednisolone as off Dec 2012.

History: 3.5 ml Prednisolone - changed to 2.8 ml Dec. 14, 2010, down to 1 ml now starting April 12, 2011, then to 0.75 on May 20, 2011. Moved to 0.5 ml on June, 29, 2011 2x 0.4 ml

1 Multi Vitamine

0.25 ml Ergocalciferol

1/2 Tab 50 MG of Trazadone

1 Zertec - for possible Allergies - started Dec 2012 by Dr. Maynard due to coughing

Nasal Spray Fluticasone Propionate 2x Daily - for possible Allergies - started Dec 2012 by Dr. Maynard due to coughing

Cyclosporin - Discontinued

2.5 ml Enalapril - Discontinued on Sep 30, 2011

15 mg Prevacid, as of Oct 2 Pills daily - Discontinued as of Dec 2012 due to change to Nexium.

1 1/2 Teaspoons Ferrous Sulfate 220MG/5ML Elixir (Iron Supplement) - as of Jan 13 2011. Discontinued on June 29, 2011.

As od Jan 24 2013 we are adding:

twice daily:

Ventolin HFA 90 mcg per actuation and

QVAR 40 mcg, both used for his Asthma Diagnosis

Weekly:

Methrotrexate Injection 0.9 ml, 8.5 mg as off September 2013, 0.6 ml (0.8 ml as of Dec. 2010). Might be changed to Oral Pills (8 a day) to not have the Injections anymore. Starting Nov 9 2011.

also added to weekly on Jan 24 2013

1 tablet Leucovorin CA/Folinic Acid 5MG Tab to replace the Folic Acid and help against Connor's Mouth Sores.

Monthly:

IVIG, started to move to every 6 weeks in May, 2011. May be discontinued for now starting December 2011 as Connor just had his IVIG on Nov 3, 2011

Solumedrol Infusion - Discontinued in February 2011 due to Strep, but added two more Infusions in September 2012 due to Connor flaring.

Methrotrexate Infusion

After Tapering for months in regards to stopping the IVIG Infusions, stopping the Cyclosporin, going down to 0.4 ml of Prednisone and finally having Connor's Medi Port removed by June 2012 we are sad to say that he had a setback and we are now back to the following to combat a Flare that was possibly caused by a Virus:

4 ML Prednison Daily, starting August 5, 2012

9 Pills of Methrotrexate on August 8, 2012

22.5 mg/0.9 ml Methrotrexate Injections starting August 14, 2012

NO MORE PREDNISOLONE starting Jan 29, 2014!