Our Journey thru JDM and Life!: Fascinating Reading ...

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, February 2, 2012

Fascinating Reading ...

It has been very interesting to read several different news outlets that have mentioned yesterdays Forum in Woodland Park :)

I have to say most got it perfectly right, starting with CNN and MSNBC, two I had to read twice (yahoo and a news cast from Denver) who said I asked Rick Santorum to pay our medical bills.

I can promise you I never asked him to pay for Connor's medication. Connor question was about having more affordable medications available for everyone.

I can say that all of Connor's medical cost was payed by our Insurance (UHC) and us. We never had a fundraiser to help us pay any bills or received any money from anyone in this regard.

I have in the past asked for people to consider donating money to CureJM, money that goes directly towards Research.

So we do take pride in the fact that we have not burdened anyone to help us (as of yet - haha) BUT if Rick Santorum does feel so inclined to help some families then please let me know as I am sure I can supply him with quiet a list of families that could use all the help they can get!

Thank You!

R A C A

1 comment:

KLPMillerFebruary 4, 2012 at 7:19 AM
Funny when I told Grant about this blog post, he said to me that the Smiths have learned about the media what we have known for a long time, the media doesnt always get it right, and you can't always believe what you read! We have had so much negative experience in this area when Fred was in the public eye! Save the articles that you can, I am sure the boys will get a kick out of them when they are older too!
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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!