Thoughtful House Part 3

Tuesday we had another follow up with Lucas at Thoughtful House. Let me just say, I love him so much, he is so very awesome, not only in all his knowledge about Autism, but he is loads of fun to talk to! Well of course he is at $300 an hour. Anyway, because of my very busy schedule right now, we decided to do the appointment via phone rather than drive all the way to Austin. It proved to work out just fine, but the enormous amount of information he gave me is mind boggling!! It's a big task, but I’m gonna TRY and give you all the jist of what's going on and where we are going after today's appointment....

Great Things
First we started out talking about the "Great" things that are going on. This was pretty funny because when I sent over my pre-appointment questionnaire, I left that part blank. So of course Lucas was like, "okay what's up, you filled everything out but that part." I think he was a little more than concerned. But of course it wasn't that we aren't seeing any "great" things, it's just we are seeing a lot of little things that are all pretty hard to describe. I told him to sum it up, the most noticeable thing is, he seems to be feeling better. I would have never in the past said he was in "pain", but now looking back I sort of think he was. He had a big bloated belly all the time and would lean over the arm of the couch (which duh, now I know he was trying to relieve the pressure on his tummy). I think this contributed some to his aggressive behavior, (okay, if you know little man, he doesn't have extreme aggression but comparing pre-treatment to now, he for sure had some). Of course I never thought all this "posturing" and aggressiveness was because he hurt, but looking at him now, I really think he was. The "Great" news is now both of those things are gone!

Let's Talk Poo
So on to talk about poo and boy did we talk about poo!! How often, how much, what shape, sticky or smooth, wet or dry, was there undigested food, what color, what did it smell like.  You know you can sure have a lot of fun talking about poo...I should have had my 11 year old do it, as we all know boys at that age like to talk about bodily functions that involve the back side!! :)

Diet, Meds and Supplements
Next we talked about the diet and supplements and what we are seeing there. Really nothing to report, his biggest concern was with the B12 shots, I guess they can have a tendency to cause sleep issues (which he did NOT warn me of before...hmmmm, maybe he did that on purpose?!). But no sleep problems, he's always been a great sleeper (knock on wood). So good news there, we don't have to change anything just keep doing what we are doing.

We then talked about the rounds of antibiotics and diflucan and if you remember the Great Escape from the YMCA, they caused a little disruption (okay a lot of big bad aggressiveness), but all of that is gone. Lucas said that all this was evidence that the meds did their job and the issues were due to "die off" of the bugs and yeast. Yippee!! This means we are done (for now) with those things. He only suggested that if we want he can start taking a digestive enzyme to help his body further breakdown his food and aide in better digestion. But he said he really didn't think it was essential and we could skip it for now. (So we are...just so we can use the $$ on things that are more effective.)

Next Steps--Big Boy Meds
Lucas said based on everything we are doing, his "gut" is stable enough to get on with some serious "big boy" meds (his words, not mine--a little scary??) So we are moving on to the next big step and will do some "challenge tests" to determine what type of chelation will work best.

Chelation
Okay, quick lesson on chelation (feel free to Google, if you want to see all the good, bad and ugly of it). It is somewhat controversial, because of what it does. Think of it as a magnet, you take the "chelator" (magnet) and it attracts any and all heavy metals to it as it travels through and out your body. The concern is that there are some "metals" that we need (zinc, iron, magnesium etc) and the chelator can't tell which is which so it takes all of them with it; leaving a risk of mineral deficiency. To offset this you increase intake of those metals, and take them far enough outside of "chelating" so that they don't get "pulled" from his body. Spencer is currently on all three as a smoothie supplement. Why do they treat Autism this way? Well, most ASD kids have trouble ridding their bodies of heavy metals; therefore, heavy metal burden is one of the prevailing theories behind Autism. Just do some research on vaccines and Autism...theory there is the "metals" that are used (thimerisol being the biggest culprit) become too big of a burden for some kids bodies to handle and thus cause brain dysfunction.  Heavy metal toxicity has been proven to cause brain disorders. Enough of all that mumbo jumbo.

Challenge Tests
Basically a challenge test is done to see if and how much "heavy metal" is being dumped from his system. To get a true read on this we have to collect every bit of urine for 6 hours. (Mind you Lucas said if he happens to have an "accident" or we "miss" any, we have to start all over again.) From there we shake it all up and take a little bit and send it in to be tested. So that's a challenge test, we get to do this several times throughout this process, so keep that in mind! :) YAY!

Testing and Treatment Plan
The testing phase goes something like this....

Step 1: First challenge test--we need 6 hours worth of urine, so Lucas suggested we do it on the weekend, yeah right! We are so busy I can't imagine having to try and do this "on the run" so needless to say, Louie and I will be holed up at home for a day. No biggie, we can do it.

From this test, they will check his metals to see if his body is riding itself of them and how much. Now, if the test comes back with zero metals, that doesn't mean he doesn't have metals, it really means his body ISN'T getting rid of them. So no metals is actually bad.

Step 2: Suppository Chelator--we will then do 3 rounds of suppository chelator. I will seriously spare you the conversation Lucas and I had about this! It was funny, embarrassing and not something I care to bring back to life here! I will say that each suppository has to "stay in" for an hour. If you know Spencer any thing that goes anywhere around "that area" and it's all over--poo city!!! So to make sure they "stay in", we have to do a "pre-suppository" suppository to clean him out. UGH!! If per chance it doesn't stay in, we have to start all over again, but have to wait a few days before we do so, because he needs to be empty of chelator before you start. This goes on for 3 days in a row.

Step 3: Challenge test post chelator--this is the same test, but this time we will hopefully be able to get a read on what metals and how much the chelator can "pull".

Step 4: We will next travel to Austin for a blood draw to test liver, kidney and blood "health" (counts & levels) to see if he can handle Chelation treatment. They will keep an eye on these throughout treatment.

Step 5: While in Austin, we will do one round of IV Chelation, followed by 2 rounds of suppository chelation and then another challenge test.

So after all that, we look at if and which treatment is most effective and will then decide how we want to move forward.

Goods and Bads
Suppository chelation is pretty inexpensive and can be done at home.
IV Chelation CAN be more effective (not always) and requires a trip to Austin twice and month and costs a little more.

Long Term Outlook for Chelation
Chelation is one of the most aggressive and effective treatments for Autism.....IF (big if) the child's symptoms stem from heavy metal toxicity. Of course we won't know about that for Spencer until we get this treatment underway. There are kids Lucas sees that chelated for 3 months and now have stopped because the child was able to start moving metals on his own and had made great progress very quickly. He also has some kids that are going on 2 years of chelation and have seen very slow but steady improvement. Lucas has seen all sorts of improvement with chelation anything from talking to improved attention and behavior.

My Expectations
What are my expectations for Spencer? I pray for the best and expect very little. I know that sounds a little less than optimistic (from someone who is an incurable optimist!), but in the world of Autism, there isn't a magic bullet, there isn't anything you can take or do that will cure it. On top of that, there are TONS of treatments that claim big things and yet just a handful of people see any change. But, I trust Thoughtful House and know they are the best and most knowledge. I'm also confident that they will lead us down the right path, are very thorough and will not keep us on a treatment that's only moderately effective. That's why we finally decided to bite the bullet and go to them for help. I figure we will give all this a shot for a year and then decide if it's worth it. It's a lot of work and isn't cheap.  But for now, we are seeing good things so I am feeling pretty hopeful about it.

Please keep us in your prayers as we journey down this next road, it is going to test my patience and my will! 

Until next time....grace, peace, hope, love and prayers!

T

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.
Proverbs 3:5-6