Thursday, September 1, 2011

Getting the blood work!!!

The nurse at our neurologist office called and said that the insurance company told her today that the blood work will be covered!!! The genetic testing, however, will not be.  I asked her exactly why we need these tests.  If you have a recent diagnosis you may be wondering as well and here is what they told me.  The blood work tests for metabolic diseases, which is basically the way your child uses their energy.  1 in 160 kids with "autism" actually have a metabolic disease that can be treated with medicines, supplements, or a special diet and it can cure or fix the autistic symptoms.  Thats why you hear of people that put their kids on the gfcf diet and their kids are cured or nearly cured.  Additionally, that's why some kids have no response.  So I am so excited to be getting this testing done.  We will be heading to TX Children's today or tomorrow for it.  The genetic testing tests for the things I have mentioned before such as mental retardation, fragile x, etc, but also 25% of autistic kids are missing a chromosome.  She told me that while this isn't life or death its good to know in regards to therapy and treatment.  There is no cure or even medication for this, but it lets the parents develop a better plan for their child.  I am assuming maybe an easier therapy plan or something.  I would really like to get that testing done one day, but for now we can't.  I believe the bloodwork was covered because of Jacobs macrocephalis, which is a medical condition that can be the cause of the metabolic disorder.  The tests will take 4 weeks for results, so please pray that Jacob may possibly only need a change of diet.  That is best case scenario.  I am preparing myself for both though.  I am just so happy we are getting this blood work done and so thankful that God provided a way!!

1 comment:

  1. Allison, this is such good news! Having those blood test results will help with so many decisions, you'll be able to focus on trusting God's loving plan and your course of action for Jakey, eliminating the wasting of energy wondering if this or that decision is the right one. At least, that is how I "see" it. Pastor Nathan's sermons are wonderful reminders of how God is in control, He is loving, and HE LOVES US IMMEASURABLY!