Thursday, February 12, 2009

Update on Chuckles.

Its been some time since we've managed to get an update out here. Apologies for that.

Things are moving along with Charlie. Here's where we're at:

We've been slowly pulling him back off his seizure meds and watching if there's any effect. So far, we've not seen much difference. He's still having seizures multiple times a day of varying intensity. We figure, if there's no diff between taking the meds and not taking the meds, then why keep filling him full of the stuff.

We just had an appt with his Bio-med doctor, Dr. Humphries, and we've moved on to giving him B-12 shots. This is the next step for him in his bio-med therapy. Right now he's on an assortment of meds (Vitamin C, fish oil, aceto-catmine, child essence, fair biotic, melatonin, and one other I can't think of the name) from this dr. Its taken several weeks to build him up to that. The purpose of these are to help level off some of the internal checks and balances of the body.

This next step is where people that have used this therapy have really started to see some cognitive progress with their kids. The vitamin B-12 shots are given to him every three days. Mom and Dad (mostly Dad because it freaks Mom out) get to give him the shots. People that have done this have said they have seen progress in as little time as two weeks, but the dr says two months.

If this does work, it will really open up Charlie's mind to be able to absorb the teaching that he's getting at an accelerated rate.

In the meantime, we're also considering some meds to help him sleep better at night. Many people have mentioned that they saw marked improvement in their children once they started to sleep. In order for the body to store knowledge and learning into long term memory, the mind has to hit a REM cycle during sleep. It usually takes about 90 minutes of continuous sleep to hit this cycle. We don't think Charlie gets to that point very often.

We've not had a sleep study done on Charlie, but based on what we can hear in the room next door, we think he gets between 4-6 hours of sleep a night, sometimes less. Hi sleep is constantly interrupted. We'll hear him at 10pm when we're down relaxing, at midnight, at 3am, and by 6am he's usually up and yelling at us. We've actually considered installing a infrared web cam in his room, so we can observe his sleep patterns, but haven't done it yet. Maybe someday I'll figure it out. :-)

So, the plan for now is to get him a couple of weeks into the B-12 shots to make sure he's tolerating them, then we'll move onto the sleep meds. In the meantime, we're trying to prep our house for the oncoming diet... We're installing magnetic locks on every cupboard/drawer in the house, and replacing our pantry shelves with cupboards.

If anyone is asking why we go so slow with the meds, there is a reason. Charlie has tried so many and had such wild and varying reactions to them, we take them one at a time and watch his behavior to see how it affects him. If its a bad reaction, we back him off.

So, good times.

I'm not sure how much sense this made. Its taken me a while to write it between doing a bunch of other stuff.

GOOD NEWS: Just heard Clay's Law passed!!!!!! Steff was up there so I'll let her fill everyone in later on. YAHOOOO!!!!!!


Josie said...


One question....melatonin? Does he take it before he goes to bed? That's what we give our kids when they are jet-lagged.

Tim and Nancy said...

Congratulations on Clay's Law. Tim has a nephew & niece with autism and it helps so much to be able to now have insurance to cover them. You guys are real heroes for what you have gone through & continue to go through. I could never imagine the struggles & heartache you face daily. We love Charlie & keep him in our prayers. If you ever need anything feel free to call us.

Kristie said...

Hope things go well. PLEASE let me know if I can help in any way.
Kristie Carlson