5.09.2008

aaaand more slacking

I can't believe it's been as long as it has since I've updated. Sometimes my days get away from me and before I know it, it's time for bed and to get up and start it another day all over again.

We had an appointment with Dr. Berger on the 1st. We reviewed all of the recent labs. There were some red flags for mitochondrial dysfunction, so he's suggested we have the remaining labs done to confirm. I haven't been able to do that yet, but plan to take him in on Monday.

Other new things: We started Biotin - 1/2 cap twice a day. This is to help with the yeast issues, hopefully. We lowered his Sporanox to 4 ml. from 8 ml. and are hopeful that with the addition of the Biotin, we can keep the yeast monster away. So far, so good. We're going on the 2nd week, and I haven't seen any bad/negative behaviors which would indicate that Mr. Yeast Monster doesn't want to stay away. We're also going to start Carnitine after I get the remaining bloodwork done. This will help his Carnitine levels, which were SIGNIFICANTLY low. I've heard from some moms that supporting the mito dysfunction has been a saving grace for them - and they've had some great progress. I'm hoping for the same, obviously. We also started ongoing chelation. I've been waiting for this to happen, so I'm glad it's finally here. It took almost a year. We started biomed in May 2007, and started ongoing chelation in May 2008. So yeah, a year. Wow. We decided, based on his challenge tests, to use EDTA suppositories. He gets 1 every other day, 350 mgs. each. After 8 weeks of this, we will stop for 1 week and do another challenge test with a 750 mgs. suppository. I'm hopeful, but I know it's a long road and expect to be chelating for months, possibly years.

As for how he's doing, he's been doing great actually. Here's a recent note from therapy:

- Programs: Probed a lot of gross motor, fine motor & object imitation skills as well as some 1 step instructions to add to his program. Great discrimination with identifying eyes, nose, head. Stack blocks was better today with different blocks and transferred well to the blocks I was using yesterday.
-Communication: Independent mand for "go" ("toh" and sign) when leaving the bathroom this morning. Lots of independent "m-ooo-eee" and the end of session (for "movie"). Needed prompts in the beginning. Echoics sounded very good.
-Inappropriate Behaviors: 0 1st hour, and 0 2nd hour. (YAY!)
-Potty Information: Sat on potty for 2 minutes while playing with slinky. Then changed wet diaper. Pulled up pants independently.

So, he continues to progress. Slowly but SURELY. He's trying to sing along to songs now, too. He will try singing songs on TV, and will also fill in words to "Itsy Bitsy Spider", "Old McDonald", and "ABC's". He's asking independently for "paper".

The chelation is tough, on me and him. I hate having to give him suppositories every other night. Add in the MB12 shots ever 3 days, and I'm always having to mess with his little bottom! I just hope he thanks us one day. More later.

3 comments:

Rachael said...

Haven't seen an update from you in awhile. Wanted to check in and make sure all is well with you guys?

Tammy said...

I know what you are going through. My daughter was diagnosed with PDD last year She was 2 years old then. She is now 3 1/2. She is also a patient of Dr. Berger. We saw him on June 4th and he has started us on the EDTA. We will also try DMPS and DMSA to see which works best. We are doing many of the same things you have done with your son. I keep telling myself to stay the course.

-Rhonda said...

Tammy, would love to talk about Dr. Berger and your experience as well. Email me if you can. Thanks for your comment!