Update: lab work and chelation

We performed another round of blood lab work in June and had a follow up phone appointment with Thoughtful House.  In February, Josh's lab work showed his thyroid levels were off (hypothyroidism) and he was very vitamin D deficient.  We re-checked those as well as liver and kidney function again so we could decide to start chelation.  His thyroid levels are now in normal range, vitamin D is still low, but is at least at the bottom of the normal range now.  Normal levels of Vitamin D are 40-100.  In February, he was 33 and now is at 40.  We want him to be around 80.  His liver and kidney functions look good!  Whew.  I always worry about those from issues I read about kids with metabolic issues.  Anyway, our action plan is to keep his thyroid meds as they are.  They could use a little optimizing, but it can wait.  We did mega-doses of vitamin D for 2 weeks and are now at a high dose.  We'll re-check them again in a few months.

We got the green light to start chelation.  We did a challenge test in December where we took a sample of Josh's urine as the starting point.  He got 1 dose of DMSA, a chelating agent to pull toxic metals out of his body.  We collected his urine for the next 6 hours and sent both urine samples off to the lab.  They came back with relatively few metals in the pre-challenge test and very high levels in the post-challenge test.  For ASD parents (and anyone else interested), I have uploaded his lab results to share.  The difference in levels shows us that the DMSA helped his body to get the toxins out and that they are present in high levels in his body.  Now that Josh's immune system has settled from the diet change and the yeast in his digestive system was in better check, we decided it was a good time to proceed with chelation.

Our chelation schedule is 3 days on, 11 days off.  We have completed four rounds.  After the first round, I can't say we saw much difference.  The Tuesday after the first rond, he was very chatty all day.  In his ABA therapy, they keep track of all his requests and comments (to peers) as part of his daily data.  Normally, Josh as roughly 20 requests and 15 comments each day.  That Tuesday, he had over 50 of each!  After the second round, he has started speaking more complete sentences.  The other day, he said, "Look, Mom.  I found a waffle."  He's been good about commenting to us, but the little words are starting to fill in more often.  Before, it would have been more like, "Looka, Mom.  Find waffle."  He's starting to correct himself on using I/me.  Most often, he'll catch himself saying, "Help you." and switch it to "Help me."  He has made HUGE headway with potty training, even initiating.  I was worried we'd have to schedule train him for years.  All in all, he's a little more with it and some of the oddities in his behavior are reduced.

The bad part of chelation has been that it has aggravated Josh's yeast.  His doctor warned us about this.  I gave it two weeks before calling about it.  He put Josh on Nystatin to help battle the yeast.  It's helping, but he's not completely clear of it.  He's still waking up at night, which is the killer!  Kate is sleeping through the night most nights now, except when she is teething, so I'm guilty of just sleeping with Josh. I'm too tired and know I need to break that habit at some point.

We had tried giving Josh S. Boulardi to help with yeast and gut healing, but after two attempts of slowly giving him small quantities, we linked it to severe aggression.  He would go into complete meltdown, overload, head banging, unable to control his emotions.  It's hard to believe that so little of something like that could do so much to him.  I was really upset to say the least.  We have taken leaps forward this past year, and seeing behaviors like that take us back to over a year ago behavior-wise.  I remember telling God that we'd deal with whatever we needed to with Josh, but begged that He take away the head banging and aggression.  When Josh goes into those modes, I am sad and fearful.  He is 42" and 43lbs, a big kid.  What would life be like if he's like at at 6? 12? 20?  I pray every day that won't happen and I am thankful every day for the progress we have made.

So, that's the quick update from here.  We are heading to Austin soon for an in-person follow up with Thoughtful House.  We're extending our trip a few days to turn this into our summer vacation with the kids.  We're staying in a hotel with a full kitchen so I can store all of Josh's food and do any cooking I don't get done before we leave.  The kids think it's a treat to stay in a hotel, swim and go to a museum or two, so we'll enjoy them being young and appreciating us making a family vacation on the cheap this year.