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)-

Hope

Hope

Friday, February 10, 2012

Free Market, oh how well it works ...

So the FDA is scrambling to find resources FAST to supply Methrotrexate to the children that need it to survive. They of course showed kids with Cancer on TV, Leukemia for example, but all of you know that all or most of our JDM kids use Methrotrexate as well.
Connor has been on it daily in the first eight weeks since he started treatments, then twice weekly and now once weekly for OVER two years. Methrotrexate is the medical term for Chemo Therapy and how shocked are you to learn that there is an extreme shortage right now in Hospitals everywhere?

The reason you might ask? Well, it is a generic drug and there are three Pharmaceutical Companies making them in the USA. Unfortunately for them since it is a generic drug it does not make much profit so they do not meet the demand anymore.
Now the FDA has to look at other countries to find supply very fast as there might be resulting deaths happening to kids who are not getting this life saving drug very soon. This is not some hype coming from me it is on the news if you watch it or just pick up the phone and call a Children's Hospital or a Pharmacy and find out for yourself.

Oh, but then I was just told this week from a concerned citizen here in Woodland Park that we the USA are the greatest country when it comes to taking care of the medical needs of our citizen. As a matter of fact I was told no country comes close. REALLY???? should I start listing the European Countries that might put this all in question? and NEVER have I heard of a shortage of life saving medicine coming from Germany?
Yes, by now my enemies will want to yell at me to go back there but I tell you if you can't take the criticism and see the need for change then you are the one that is the enemy. You rather see children die just so you can be right? How sick is that?

So sweet dreams and trust me I will list every name of a child that will die due to this if I can find it. I hope with all my selfish heart it won't be my son. Remember he has Chemo Therapy every week?

You know what makes me the most angry right now? I was so prepared to write this really happy and funny post about today's Snowboarding incidents with the boys, but I am sick to my stomach right now so don't feel it. Maybe I will post it tomorrow.


R A C A

1 comment:

  1. Oh, Anke! That is terrible! I understand your frustration and actually, I am so angry right along with you. Even though Elizabeth doesn't need this right now, my heart is breaking for all of the kids who do! I will pray that this supply issue is resolved quickly and that the insane health care in this country will improve really soon!

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