What a crazy week.  My mom came up here to help me for 5 days - and on day 2 she came down with the stomach flu!  She struggled through two days of it and I struggled in prayer that Cody wouldn't get it.  So far, so good. 

We went to see our DAN Dr. (D.A.N. stands for "defeat autism now").  We've spent months testing Cody's blood, urine, stool and hair to try to detect any deficiences, abnormalities, problems.  We've been on an elimination diet because it turned up that about 15 foods were red flagged for him.  It's actually seemed to help with his tummy problems a bit.  Still too early to tell.  They say it takes months for dairy to leave your system completely.  Weird.  Today we went over the remaining test results.  I may have shared this already - but we learned he's deficient in 13 amino acids.  There's a compounding pharmacy in Snoqualmie that concocts an amino acid powder out of the missing amino acids - to supplement with.  So that was one good discovery that may make a significant difference.  Most everything else was normal - except for one glaring thing.  Cody has a "severe" case of candida, or "yeast."  It showed up on three different tests and the levels were through the roof.  Specifically, his "lysozyme" level was the one that was sky high - it's an enzyme secreted at the site of inflammation in the GI tract.  That means he has a pretty bad case of intestinal inflammation - which could be pretty painful.  Suddenly as I heard the Dr. read the results, I thought "FINALLY perhaps we know why all the tossing and turning at night - the moaning and whimpering all night - the rolling around bent over all night.  We've sought out an answer to that problem for 2 years now - seeing GI Dr's, naturopaths, MD's, neuros....with no one able to pinpoint the cause until now.  The Dr. even confirmed by saying, "does he ever bend over on things and put pressure on his stomach that way?"  Don said, "YES!  He often goes over to the couch and leans over onto it so that he's standing with his legs, but bent over  on the couch.  Dr. Ranheim said kids with yeast inflammation are often found putting pressure on their tummies this way.  In Jenny McCarthy's book on autism, she shares about her son's massive yeast issue and that once they began treating it, he began to finally talk!  For some kids it isn't so dramatic - but yeast overgrowths are serious and can cause a variety of issues that affect the brain and cognitive processing.  So we'll see where this takes us.  I'd be happy if he just gets a peaceful night's sleep!

We are beginning a yeast treatment with diflucan and nystatin - and adding two different probiotics to replace the stripped bacteria. 

So that was one big bit of news.  As Dr. R read through all the test results, he said something interesting - that he always hopes for something to be "off" in a big way because at least it means there's something to fix.  So the huge yeast issue was at least something significant that could make a big difference.  It's funny because I was feeling glad when so much was "normal" - but after hearing him say that - I was rooting for finding something terribly wrong.  So weird how your perspective shifts.

We're also supplementing with CoQ10, calcium citrate, milk thistle (for liver support), a multi vitamin, iron and magnesium.  Cody's tests showed these supplementations were needed.  So off we go - one more adventure.  I'm cross checking everything to make sure nothing interacts with his seizure meds - and to make sure that we don't change too much at one - which could stress his system and lower his seizure threshold. 

I like Dr. Ranheim - I think he knows his stuff.  But the appts. are only 30 minutes which just isn't enough time if you have a complex child with seizures and autism.  But he's in such demand, you just have to take what you can get.  At today's appt. I was completely overwhelmed and had a list of questions and he said that time was up and we'd have to tackle the rest at the next appt...and of course there's no opening for 2 months.  I did follow up with his nurse and got some of my questions answered.  But there are so few MD's who have specialty's in autism - that I wasn't going to get too militant because I need this guy.  But it is frustrating to have so many questions about these results and no time to ask them.  Such is the life with a Cody. 

So that's where we are now.  We start the yeast detox tomorrow as well as the amino acids and the supplements.  One other thing I like about Ranheim is it's one stop shopping - you can buy everything right there at a discount from what you'd pay anywhere else.  Convenience is my love language.  This has taken TONS of work getting all the testing done - a fair amount of money because insurance doesn't cover much of it - and now more hassles as I run to Snoqualmie to get special compounds made and come up with a schedule of how in the world I"m going to get all these supplements and meds down my son who already takes seizure meds 3 times a day!  And like everything else we've tried - it may or may not work.  But as always, my motto is, "at least I've tried everything and left no stone unturned." 

We have his VNS surgery scheduled for August 29th.  I'm glad we have a month to see if any of these new treatments helps his seizure load at all. 

That's it for now.  My brain hurts.  Dr. Ranheim told me more information than my poor tired brain could absorb.  Oh, he's a PLU alumni by the way!  And a Christian.  There's a few months wait to get in to see him - and he's all the way up in Lake Stevens - but if you're in the area - you might want to give him a shot.  Write to me if you feel overwhelmed by all the testing - you have to send lots of urine samples by FEDEx - stool samples - hair samples - lots of "mad scientist" stuff in your own home.  But it's easier if you give yourself a couple of months to get it done -- and have someone like me to cheer you on.  It's cool because I now have a thick packet that tells me every single ion, porphryne, peptide, etc. Cody has in his body.  I sure know my son well now! 

with love,

Shawna