Friday, April 07, 2006

not exactly more of the same, but definately some of the same....

We did a bunch of tests a month ago and we went in Wednesday to learn the results. First of all, when I say we did a bunch of tests, I mean that literally, WE do them. I have to collect all these samples in take home kits and then send them off via FedEx, or UPS, etc. for analyzing. It is a PIA. I have to restrict certain foods for some of them, fast Abby for others, only follow an abbreviated vitamin protocol for others still. Some are 24 hour collections, others are timed. Ugh. It is nervewracking to keep it all straight and to collect them accurately. I always worry that I am doing something wrong.
First the good news:
Her yeast looks good. YAY! PTL! This means the modifications that we have made using the SCD and digestive enzymes are working and we can continue to allow limited dietary infractions. I am soooo glad. I was really nervous the test would indicate a need to return to the hard core Gluten-Free/Casein-Free, sugar and all its derivatives-free, yeast-free diet that we followed without a break for a full year. Now we still do follow this for the most part, but the occasional (very occasional) french fries or birthday cake and even Pizza Hut thin crust pizza is okay. This means a lot more freedom for us as a family to go out and eat, etc. So this is really good news.
The not so good news:
One of the tests we ran was on Abby's neurotransmitters. Her incresed inability to attend has worried me for more than a year. The ABA people say that we can improve it by modifying her behavior, but I don't know. Maybe that is true, but I can't ask her teachers to take all this special time out to keep her on task and I am not sure I even agree with them because even highly preferred activities are very hard for her to stay focused on anymore. Her SLP has mentioned her inattentiveness more than once. Anyway, this test was to see how her brain was working to produce dopemine and seretonin, etc. The results were unusual (the docotor's words). The tests indicate that she is producing everything, all 8 chemicals that our brains require to function properly, and in very high amounts. He said that this indicates that the connection is faulty, rather than the equipment. Now we are adding some new stuff to her regime to hopefully facilitate connection: TravaCor, EndoTrex (theanine) and Calm-PRT. To be honest I don't really know what to make of this information or how the new protocol is supposed to work on the problem. I have emailed a neuro friend of ours to see what he thinks. I know I should be relieved that we aren't going to have to medicate this ADD issue, but after all our hard work, I guess since starting Emma Jean on Paxil made such a huge impact on hers (and ours) quality of life I halfway hoped that there would be somethng to help Abby like that.
The bad news:
We did another toxic metals screen and her lead level is OFF THE CHARTS!!!!
We have to begin chelating again. I hate this. We are using a different chelating agent this time and it will be oral instead of transdermal, but her behavior was terrible the entire year that we did this before. She started doing all kinds of weird stimming (finger flicking, hand-flapping) and it scared the bejeebus out of me. Regression is a very real and looming fear at all times when dealing with ASD's. When I see a bunch of problematic and frankly "autistic-y" looking behaviors suddenly emerge it is terrifying. I told the doctor that we are doing everything we can to get her socially and mentally ready for school next year and I am loathe to get her weirdness all riled up and then send her into the classroom when we've made our case for inclusion already, KWIM? He says he has never seen the kind of things we experienced with DMPS with the DMSA chelating agent we will be using this time and we are only doing it on the weekends. I am still nervous. I am also just flummoxed about the source of this stinkin' lead. What the heck?
Anyway, that's our mixed bag. I have to schedule a big ol' blood draw to test her organ function too. Joy.
Time to break out the diazipam.
Yours, O LORD, is the greatness and the power and the glory and the majesty and the splendor, for everything in heaven and earth is yours. Yours, O LORD, is the kingdom; you are exalted as head over all.
1 Chronicles 29:11


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