Our Journey thru JDM and Life!: October 2014

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)-

Friday, October 3, 2014

A new Chapter for us!!!

To say I am happy or thrilled would be an understatement! We just got Connor's latest blood work in after his discontinued use of Methrotrexate. The email I received from Michelle was truly the beginning of a new chapter.

Thank you to the amazing and talented Medical Rock Star Team that looked out for Connor in the last 5 years (or close to it).

Thank You to all the tireless work of each therapist, PT, OT, Speech etc etc.

Thank you to all the friends who kept sending love and support even when I was at my most angry and heartbroken state.

I admit everything I look at at our past starts with:

'Before JDM we ……'

'After JDM we…..'

There is no denying all 4 of us are different due to this disease but while I often looked at the things we lost I am also looking back at every step that made us more aware and educated.

The fear will never leave me completely since he is not in remission yet and since there is no Cure yet.

So here are parts of the e-mail I received this am:

Hi Anke,

I just wanted to let you know that Connor’s labs look great!!!! His aldolase is still pending but his CK and LDH are perfect!!! I assume that these are the lab that we discussed getting 3 weeks after discontinuing methotrexate? How is Connor doing? How is the start of his school year going?

If everything is going well, we can continue without medications. We should check his blood tests in 3 months or sooner if he has any symptoms of rash, weakness, etc. …... If Connor has ANY return of symptoms or you have any questions or concerns, you can reach the rheumatology nurses at xxx-xxx-xxx and they can get you in touch with Dr. Soep.

I am so excited for him!!!!! Have a great fall!

Michelle

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!