Sunday, June 2, 2013

If at first you don't suceed....

Alright, so I first started this blog about Josh and all his issues.  However, now with Justin having issues and Hailee having a really hard first part of this year.  I have decided to included everyone in all future blogs.  Here are some updates.  We went to the Amen clinic in Feb of this year for Josh.  We found out that Josh has temporal lobe damage and part of his left temporal lobe is caved in.  Not good news.  Also he has what they refer to as the ring of fire.  That means his brain is firing all the time 24 hours a day.  He can never quite is brain.  After many trials and errors, I do believe our new round of meds and supplements are working.  It isn't perfect but I think it is getting better.  Now onto Hailee.  The first part of this year her Mitochondrial disease came back with a vengeance.  She was hospitalized several times due to her cyclic vomiting syndrome.  She also had to be in a wheelchair due to extreme fatigue. She is better now and with an addition of her new med, she has been episode free since March.  Now onto Justin.  We have known for a long time now that he has extreme behaviors.  He was diagnosed with ADHD about 6 months ago, which was no surprise.   However, things went from bad to worse with him.  To the point that we had no options other than to see Dr. Jerry for him as well.  We have an appointment to go back at the end of June.  We got some of his test results back and he has high levels of Yeast and Salicylates in his stool.  I looked up a low Salicylate diet and it turns out everything we were feeding him was extremely high in Salicylates.  Oh man I feel horrible.   You think you are feeding your child healthy, just to find out that no you are in fact poisoning your child.  That for your child these foods are toxic.  Even though I have gone out of my way to buy only organic foods.  It turns out that is not the problem.  The problem is in how the foods affect him.  We haven't even got the allergy tests back yet.  I am not sure what he is going to eat.  He is also an extremely picky eater.  He craves the foods he can't have.  I know God has a plan in all of this.  I will update everyone when I get more results.  Until then crazy is my normal....

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