Our Pyridoxine Dependency Story - Epilepsy and Vitamin B6
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Scan day: 13 February 2014 UTC
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Description: A genetic disorder which results in seizures and developmental delays. Personal account of a journey from the first seizure to diagnosis in twin boys.
Our Pyridoxine Dependency Story - Epilepsy and Vitamin B6 Our Pyridoxine Dependency Story - Epilepsy and Vitamin B6 Hi Everyone. Thanks so very much, as always for checking in on us. Things have been pretty crazy around here! Daniel and Jonah are now 7 years old and Samuel just celebrated birthday #3!!! If this is your first visit to our site, please read on, our story follows. If you are a return visitor, I'm sure you've already read our story, but please check out the boys' individual pages to see how they are progressing. New "Stuff" going on with us: We are "officially" that "weird, Christian, homeschooling family" now! We are going into the twins' second grade year! The boys are doing so well all around. Jonah & Sam were just diagnosed with a bleeding disorder...after all these years without answers in regards to Jonah's frequent and severe bloody noses and easy bruising. We discovered this quite by accident as we had to get blood drawn for Sam before his ear tubes were placed (In May...where does the time go?!?!) And it was found that he had a low Factor VIII as well (something that Jonah has had in the past) So further testing (for both of them) showed von Willebrand Disease. Still getting used to the idea, and the frustration this diagnosis leaves me with is unbearable at times. But God is a big God and there is a plan. I have held strong to that faith, I don't know what the answers are right now, but one day I will know...some days I have to admit to wondering what God was thinking...but most of the time, we just ride the tide and go with the flow. So, I am grateful that Jonah is doing as well as he is, even though it can be very frustrating watching him try to keep up, I have to remember, as always, that our situation could be so much more difficult than what it is. Check out new photos on our photo page, check out my bartering page if you need something & would like to trade. Slide show also added in the links section below. Ou
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| Page title: | Our Pyridoxine Dependency Story - Epilepsy and Vitamin B6 |
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| Date | Creation Date: 15-oct-1998 Expiration Date: 14-oct-2016 |