Our Journey thru JDM and Life!: Day one at CMH is almost over....

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, January 28, 2010

Day one at CMH is almost over....

So Connor was admitted to the Children's Memorial Hospital (CMH) this morning at 8 AM and has been a very popular person since then. He met several doctors, nurses, girls from Child Life who spoiled both boys with attention and toys. Connor got an x-ray of his chest and blood taken. They will do a lot more blood work tomorrow and it was said they will need a total of 20. Not sure if that means vials or what....
He met with Dr. Allen and Dr. Miller today as well as a speech therapist and Respiratory Specialist. Tomorrow he will meet Dr. Pachman plus a physical therapists as well and he will have an x-ray/video of his throat while he has to eat and drink. We did sign him up for Dr. Pachman Research Program which means they will take two extra vials of blood plus they also took pictures of his fingernails through a zoom to count his blood vessels.

Alexander got a nice break today as they have a wonderful Children Area and the 5th floor. From 2 to 4 PM they have supervised play time for siblings and patients. When we went to pick up Alexander he was having a lot of fun playing and the attention of 4 Volunteers that played with him.... you all know how he soaks up this kind of attention....
Tonight at 7 PM there will be a clown visiting so we will go and see him as well.

Also we will take turns staying with Connor and I will stay tonight while Ron and Alexander go back to the Hotel. Tomorrow we will move to one of the houses close to the Hospital that usually hosts families of kids with organ transplants. Ronald MC Donald's is of course on the top of the boys wish list :)

So once again we want to Thank everyone for their precious e-mails and messages on FB.

More tomorrow,

R A C A

2 comments:

CarolineJanuary 28, 2010 at 4:30 PM
Thank you so much for using this as a way to keep us updated. We truly do appreciate you taking the time to do it. I've heard wonderful things about the Ronald McDonald house program. Hope that works out!!
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mylessJanuary 28, 2010 at 11:03 PM
Thanks for the updates. Is it Ok if I pass this blog to my mom & sister? They call all the time for Conner updates. Love you guys - Celeste
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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!