Our Journey thru JDM and Life!: IVIG # 4!

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, June 3, 2010

IVIG # 4!

It is Infusion Day for us here in Denver at The Children’s Hospital (TCH) and so far so good :) We left the house at 5:20 AM, arrived bright and early at 8 AM and by 8:45 AM he already had his blood drawn and was hooked up to the Solumedrol. It also looks like we will be lucky again and have a 4 hour IVIG infusion even thought the bottle reads 6 to 8 hours. The nurse mentioned that since he did well on the fast drip last time we will aim for it again this time as well. I admit I am not to worried about the fast drip even thought I read a lot of posts were people prefer the slow drip due to the side effects that can happen but as with every medication that has been thrown towards Connor in the last six months he never has shown any adverse reaction so we are hoping to stay lucky in that regard. I figure Connor deserves a break somewhere and if his advantage is in having a body that can handle stress really well then we happily take it :)

We do have some news in regards to Connor’s future Medicine Schedule since we just talked to Dr. Soep just a bit ago :) His Blood Work looks pretty much the same in every way and the only small concern is that he is still anemic. We will now do the big step of cutting back on his Steroids! Dr. Soep will set a schedule of Solumedrol Infusions of every other week. If he takes well to this then we might start cutting back on his oral steroids :) As I said before I am choosing one evil over the other but I am glad when he is off the steroids! Dr. Soep will also get in touch with Dr. Rider about the possibility of him traveling east in July or August, plus she will call Memorial in the Springs about his Therapy Evaluations so we can get started on this end as well.

Some of the news are that 5 of 6 kids from our play-date in TX have now come down with something that makes them throw up and spike at a fever of 104’F. So far it started with Ryan on Monday one day after the Pool Play-Date followed by Alexander on Tuesday, Dylan on Wednesday and now Addie and Ren are down today Thursday. Ironically the only one that has not caught it and hopefully won’t is Connor who should have been the most receptacle for it since his Immune System is completely suppressed ... So much for me being paranoid :)

Wishing all of you a wonderful start into summer and for us I am hoping for a quiet weekend ahead :)

Hugs,

R A C A