Wednesday, October 7, 2009

Blog update, We’ve had a very even keeled week.

I realize its been a week or so since I updated the blog on how Dominic is doing, and the reason for that is that we’ve had a very uneventful week with no major fluxuations either good or bad.

I do think we are finally past the yeast die off stage from the Cytoflora (only took 2 full weeks) because we haven’t had yeastie looking poop in a couple of days. He’s continuing to get nice comments from teachers and therapists, but nothing off the charts fantastic. As far as what we’re noticing at home, we’re getting a few more words out of him, but its clear by the time we’re home with some down time that he’s just plain tired and doesn’t really want to talk.

We’ve had some struggles with him not wanting to get out of the car to go into either school or therapy, and needing lots of kisses and reassurance, and are hoping that’s just a phase. We know he’s tired. We also know he’s got a lot more hard work to do.

We have reduced his folic acid supplement to only be given on mB12 shot days (currently M,W,F) with the idea that as his gut heals and we no longer have to use the “try to keep a bucket with holes in it full” approach to supplementing, that we’ll be able to go down to just 2 shot days a week and then maybe one. The next supplement that we are going to move to shot only days is Homocysteine Supreme (the last piece of that methylation cycle that includes mB12, and folic acid), and we’ll probably start that this weekend. Presuming we don’t see additional hyperactivity (which we haven’t seen w/the folic acid reduction), then those three supplements will all only be done on shot days.

We’ve also reduced his Travacor and frankly haven’t seen any difference at all. So presently, I’m thinking we’re going to stay with half a capsule until we’re down to about 5 left (the time it would take to get another bottle delivered if we needed) and then stop all together. We started it because Dominic was randomly hitting children at school and in various gym day cares, and as soon as he went on the Travacor, the aggression stopped.

We’re gearing up to start OSR in November. Before we do that we’ve got a bunch of tests to do. We’re planning on doing those tests mostly around the weekend of the 23rd of October (we need to have them shipped off, run, and returned in time for our discussion with Dr Kucera mid-November). I’ve been spending a lot of time trying to read about peoples reactions to the OSR because it is a relatively new product (about a year old, as far as I can tell) and to see if there’re any precautionary things we need to do. So far, it looks like, similar to enhansa, we need to go low and slow – starting at maybe ¼ of a capsule per day, and increasing it by 1/4cap weekly until we get to 1 capsule a day. We also may need to add molybdenum to help his body process the sulfur. Both of those questions, I’ll bounce of the doctor prior to starting. So far, I’ve seen a bunch of people have excellent responses to OSR, and a number of them have major die off reactions that made them stop entirely (hence the go low and slow advice). I still want to try pirecetam after we get Dominic’s gut cleared up, and it will be on my list of things to discuss with the doctor in November.

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