Our Journey thru JDM and Life!: Update .....

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)-

Tuesday, August 7, 2012

Update .....

This won't be a long post as I am way to tired but here is a lineup of what news I have from today:

Yesterday Connor was feeling lethargic and tired and ran a low grade fever. He also complained again about muscle pain.

I e-mailed Dr. Soep and got a call within half an hour after that. She was concerned enough to wanting to see him today and get more blood work done.

So today we arrived at TCH at 3 pm and she made some assessments as in his muscles being weak and tight. She noticed a rash on his knuckles and also the redness on his eyes. We then went down to take Labs and poor Connor had his first experience with no icy spray or Lidocane. Some tears but still a trooper.

We all got home around 7:30 pm, very exhausted and tired. By the time we had some Chinese food and getting the boys to bed I already saw an e-mail from our precious Dr. Soep. Connor is showing active Myositis and we are now trying to switch to a higher doses of Methrotrexate (Chemo) and back to Injections instead of the Pill form, this should help with a better absorption! We are also moving Connor up to 4 ml of Prednisone (Steroids) daily. Just thinking he was on 0.4 ml just a week ago, and then moved to 2 ml last week after his first signs....

Also he is getting another script for PT. He is turning stiff already and the tip toes are a factor again as well.

Thank you all so so so so much for your support and prayers. You all have been amazing all day. We had offers for Childcare for Alexander, offers to Shower due to no water this am (another story), offers for Dinner ... all Thanks to the amazing Bailey/Guthrie Family. All the txt messages, e-mails and FB postings brought me close to tears all day long, of course I am also very tired and exhausted so I am more prone to get emotional - haha

Now here are some more people that were on my mind today!

My sweet youngest daughter ended up in the ER today due to throwing out her back and having breathing problems, I only heard of this a while ago since i am guessing she did not want to worry me, as if this can be helped when you are a parent and love your children no matter what age they are! :)

My brother In-law is doing okay but will be in the Hospital until next Sunday and then will move for several weeks into a Rehab Hospital. My sister send us quiet an impressive picture from his surgery.

Connor's precious room-mate from Chicago is dealing with more Rheum related issues and we so hope he feels better soon, too!!!

And last our sweet friend Kimmi just broke her water and is going into labor right now to give birth to their sweet baby girl 'Kora'.

I am now signing off and hoping to sleep for 12 hours.

Hugs,

R A C A

1 comment:

AliaAugust 7, 2012 at 9:15 PM
thank you so much for the update. I have been praying all day and will continue! Let us know if we can help in any way, and please enjoy your 12 hours of rest!
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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!