Our Journey thru JDM and Life!: Musing again......

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)-

Sunday, June 13, 2010

Musing again......

So I changed the look of our Blog today and I am not sure if I like it yet but needed some change ...

On the right hand side there is now a list of the medications Connor is getting as of June, 2010. It has changed a bit plus I get asked quiet a bit what medication Connor is on. Today I read some messages on the CureJm Message Board and it seems there is such a broad opinion on what medication works for JDM and which don't. The common thread seems to be that it is a combination that helps but also that there is NO blueprint on what works for each child. One post however had me surprised once again was a Grandparent posting that her granddaughter is getting Chemo three times a month and since this is the strongest drug out there why is it not helping? I think people are always impressed when the word 'chemo' is thrown around as if that means the 'big guns' are out and now it either works or the fight is over. I absolutely disagree with this because in Connor's case it was never 'just' the Chemo that is making him better but the combination of several powerful drugs, which are for example Solumedrol and Prednisolone (Steroids), Cyclosporin, Methrotrexate (Chemo) and IVIG. I am sure even if you have cancer you do not rely on just Chemo alone so why would it be any different with JDM?

If there is one thing I am 100% sure off then it is the believe that Connor is only doing better because we are attacking his disease with everything his body can handle and there was never a question for us to try a little of this and a little of that. I saw and read about to many kids with JDM who have no long term success by not fighting this disease more aggressive then it is itself. Granted we are not a success story yet but Connor is improving by bounds and leaps after 6 month from being diagnosed.

Which brings me once again to us being so grateful that Connor has the right Doctors on his side!

So and for those of you that are enjoying some summer heat right now I am asking you to remember us here in Colorado who woke up to temperatures in the 30's this morning! Yes, once again it is June but the memo did not make it to this Western State yet :)

Hugs,

R A C A

1 comment:

txmomof2June 13, 2010 at 6:54 PM
Jealous of your cool temperatures! As I'm sure you know from Heidi, it's terribly hot here. Going to be a hotter than normal summer I'm afraid. Love the new look of your blog!
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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!