Tuesday, 16 April 2013

Jack Put It Best....

Nate has had a couple of pretty good days.  Words have been flowing quite a bit more freely than we have heard, well ever.  Yesterday he was mad when I went to get him dressed for school and he said "I no want get dressed"  or something close to that.  Last night John asked him if he wanted to go upstairs with mommy and he kind of repeated it.  He was trying to say "one two three" with Miss Gwen during his session.  He asked for more song at bed.

I am happy about it.  But over time I have learned to take each day as it comes, and all progress as a "good day" until Nate proves otherwise.  A year ago, I would have felt like "here we go!".  That this was "it" and Nate was going to start making huge leaps like some of the other kids.  I have set myself up for disappointment too many times, so now, I try to just smile and think, yes, he's in there somewhere.  I restarted his leucovorin after hearing one of the doctor's lectures on cerebral folate deficiency and being told that hyperactivity on leucovorin is actually a good sign.  I started at a smaller dose to begin with and will gradually increase, as treating cerebral folate deficiency is showing great promise in autism research.  Basically, I could dump a truckload of folic acid on Nathan and it might not make it into his brain, because he lacks the ability to transport the active form across the blood-brain barrier.  The treatment for this is folinic acid (a further broken down form of folic acid).  Which by the way, is what leucovorin is. 

There are some very interesting articles on this if you follow the link below:

So we are doing that.  And after listening to Dr. Anju speak, I also started Nate on something called "yeast aid", which contains multiple natural ingredients that support the immune system and help control yeast in the body, things like olive leaf extract, goldenseal (thank God he will now pass his drug test, lol), oregano, and cranberry extract.


So those are the latest things I have changed.  Oh, and John has started doing some "juicing" as well.  His first John driven intervention- whoot whoot! 

I am watching, and I am waiting.  I am not allowing myself to become too excited at any positive changes- they could be transient.  I of course really really hope they are not.

Jack said it best this morning.  I asked him to go open Nate's door because I could hear him in there awake.  Jack said to me "I like Natey, do you?"  I answered "of course I love Natey".  He then said "I just have to wait right?"  I asked him what for, although I already knew the answer, he has been saying this since Natey was born.  And he said "for him to get bigger, so someday he can talk to me, right?".  He was looking at me so earnestly, so obviously thinking that Natey really is still a baby, that I felt the need to sit down with him for a few minutes and explain in more detail than I have in the past that Natey is having a lot of trouble learning how to talk, which is why we send him on the special bus every day.  He seemed to get it, and in the end, he is right, we do just have to wait.  We can try everything under the sun, but in the end, we can't control this.  Just have to pray and wait. 

1 comment:

  1. Hi there - I have a son with autism as well and have been reading about folinic acid. I would love to chat with you about your experiences with it - my email is misspachucki at gmail dot com. Thank you!