Thoughtful House Part 2

The story continues....

Wednesday, June 24th we had our first face to face appointment with TH. Dropped Parker off at Basketball camp at 8:15 and headed to Austin. Easy drive. Anyone who knows Spencer very well can attest that he is LAID back and content, as long as he has his "toys". (Any sort of video game or DVD player and movies.)

After a quick lunch at Panera we were there for our first appointment at 11:30 with our nutritionist, Dierdre. She's a little bit of a "earth mother", but what do you expect? Austin, nutrition, biomed....you get the point. Anyway, we ran through what's been going on with the diet and she was VERY HAPPY with us. So, feeling all pumped up and confident we left. Not much else to work on there, well except for going all natural and organic and removing food coloring, adding more water into his diet and trying to get him to eat more proteins. What? I thought we were doing good? So, back to the Spongebob game we go. We plan to start with scrambled eggs and use the same bribery we used with the smoothie. Time spent with Dierdre-90 minutes, Total cost of visit-$292.

Next Appt, Lucas Ramirez, he's a Nurse Practitioner that works with Dr. Jepsen the BioMed Dr. at TH. You can't get in to see Jepsen, he has too many patients. So we get the next best thing. I was a little disappointed at first that we don't get to see "The Man". But all my disappointment was put to bed once we met Lucas, he's a pretty cool dude. He has a son on the spectrum who is recovered (for the most part) from doing all this biomed stuff. We went through a parent interview, reviewed his test results. Okay gotta stop here and tell you about the tests.

So after our first phone consult, these 2 boxes came in the mail one was for a urine test one for a stool test. I am so dreading this that I put it off for about 3 weeks, then I HAVE to get it done to get the results back in time for our appointments on the 24th. Once I mustered up the energy and mindset to get it done, I get started!

First, the pee test, okay, we have done this in the hospital before. They give you a big bowl thing to put in the potty to catch the pee then transfer it to a cup. NOT THIS TIME!! We have this little bitty cup with an opening the size of a golf ball that I have to "catch" the pee in and then transfer it into this tiny itty bitty test tube with out spilling any and you have to do it fast because (the box says) light will ruin the specimen. Now it also has to be the first pee of the day. Oh lordy me, the pressure!! I do NOT want to have to start all over again. Now Spencer isn't potty trained, so you can imagine how this went down. I drug the poor baby out of bed at 6:30 am while we was good and asleep so he wouldn't have gone in his pull up. Still sleepy, sucking his finger, with his blankey love I put him on the potty at the ready with my little cup! Waiting, waiting waiting, here comes, he starts going, looks down and sees the little cup and stops the flow, I have only about a thimble full....CRAP!! "Come on buddy, it's okay, go potty." I say and he tentatively starts going again. We have success, I managed to catch enough pee to fill the tubes and get it sent off.

Now, maybe I should spare you the details of the poop test, but you gotta know the journey to appreciate the outcomes! LOL!! So, here we go....I'm thinking, this will be a piece of cake. Spencer has good poop consistency and he does it in his pull up, so no biggie right? WRONG!! First off, these tests have to be taken and sent to the LAB within 24 hours, via FedEx and they don't pay for weekend service. So, it's Wed, I think alright here we go....WRONG!! Wouldn't you know (well some of you know Spencer well enough that this isn't a surprise) he didn't poop for 2 days! AGH!! So, now we have to wait over the weekend and try again on Monday. Well, he pooped like a CHAMP over the weekend! I'm thinking he's all pooped out and we are going to have to wait days to get poop again!! Will I get this test out and results back in time? Damn me for procrastinating! I was wrong, Monday comes and we have poop! Yea! Now they give you this little bitty tiny scoopy thing to scoop it into 2 little itty bitty test tubes and they want you to take "several" samples within the poop. YUCK!! Through much disgust and gagging on my part I got it done and sent to the LAB.

So that's the testing story, I look back on it and laugh, but more importantly, after our visit on Wed, I am SO GLAD I made it through. You wouldn't believe how much you can tell about a person from their Poop! Testing Cost-Urine-$99, Stool-$219

So we review the test results. There are 4 good bacteria and 4 bad bacteria that they tested for in his gut. Spencer has only 2 of the good bacteria and 4 bad ones, and they are THROUGH the ROOF!! Think of it as he has 4 infections in his tummy. They also test for yeast overgrowth. It showed up as non existent "in" his poop test, but it did show up "on" his poop. What's the difference?? I dunno, but whatever. So, we have to take 2 prescriptions to rid his body of the bad bacteria, for 3 weeks. Bactrim and Flagyl. Well just like anytime you take an antibiotic you risk a yeast infection. There's a 90% chance the yeast will start to take over in his gut and cause all sorts of problems. So once we finish the the other 2 then we start diflucan for 3 weeks. On top of these three we have to start a Priobiotic that will help boost the good bacteria so they can fight off the bad bacteria once we get rid of them. Once all of that is done, we have to add in another 4 supplements, Magnesium Citrate, Zinc Citrate, Fish Oil, and Vitamin C. That's a grand total of 7 supplements that are added to the Spencer Super Smoothie everyday. Technically he explained what all these do, but I have no idea how to explain how they all work, so we won't go there. We will just pray they do what they are supposed to do.

Once we went over all that he tells us he needs a daily injection of B12 in the rump! WHAT!! I have to give him a shot EVERYday!! So then he shows us this power point on how to give a shot, and tells us "be sure not to go to deep and get it into his muscle tissue, because it will move through his body faster and he will be a crazy wild maniac!" Oh, you can bet I won't make that mistake!! I'm thinking to myself, okay, at least I have about 6 weeks before we have to start that! Look for a future post the day we have our first injection, I'm sure it will be a blast!

After we are done with Lucas, we check out. The lady at the desk says, that will be $532. Ouch! Time spent with Lucas 90 minutes. We stop off in the nutrition store and pick up 20 ANDI bars (these are super protein bars that he LOVES and gives him lots of good stuff!!) and a bottle of ProBiotics. Total cost $90.

Total Cost of visit=$913
Total Cost of Testing=$318
Previous Phone Consults=$342 (Intake $50, Nutrition Consult $292)
Grand Total Spent So Far=$1,573
Amount Covered by Insurance=ZERO!
Possible Recovery= PRICELESS!!

(Costs aren't put here to offend or ask for help, I think it's important to raise awareness about the lack of insurance support for treating autism. Autism is an epidemic and families are having to sell off everything they own to recover their children. We are lucky we have the means to pay and have much support from family!! Look for a running total with my posts, keeps they eye on the prize, recovery is priceless!!)

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

T

Because he is at my right hand, I will not be shaken. Psalms 16:8

Thoughtful House Journey Part 1

Since we are starting to blog in the middle of the story, let me just give a brief history lesson....

Spencer was dx with Autism January 2004, he was 2 years 10 months at the time. He's 8 years old now. We have tried all sorts of interventions but we were always leery of biomed. You know witch doctor, crazy hippies, herbs and potions is what always popped into my mind. But since we are still non-verbal, not potty trained and seem to be getting no where fast, I am at a point that I will let those crazy hippies and witch doctors do their thing with my child to get him well. (BTW-I really don't think they are crazy witchdoctor hippies anymore.) So, we are going down that road, we called Thoughtful House in Austin and started the process in early April, 2009.

April 29th, 2009 we had a phone consult with the nutritionist and were put on the GFCF diet. I won't bore you with all the details and all the reasons why it works. In a nutshell it is a Gluten Free, Casein Free diet, which basically means Spencer can no longer have anything that is made with, from, or derived from Wheat and Milk. Imagine almost everything in your diet has one if not both of these ingredients!!

So off we went....and I gotta say I was not too thrilled about it. I had heard about the diet in the past and thought, there is NO WAY I could pull this off. But, we made the concious decision to give this a try so here we go.

May 2, we removed dairy from his diet. Pretty easy, just started giving him Almond Milk and stopped giving him cheese, yogurt, ice cream etc. He didn't seem to miss it and we saw great improvement in his big bloated tummy. For once in his life he almost looked like he had 6 pack abs!

Over the next few weeks, it was all about research! Finding how I could replace all the wheat products he loves so much. Found great information on the TACA website (that's Jenny McCarthy's group).

May 11, we went gluten free! Saw changes almost immediately. Some people don't notice it too much, it's very subtle, but it is there and you NOTICE if you live with him daily. For one, he "looks" at us more. I caught him one day when I was riding in the back seat with him staring at me. It was really kind of creepy and shocking, he has never looked at me that way before. Second, he follows directions a lot better. We used to have a heck of a time getting him away from the PS2 in the morning and on to the bus. Just days after starting the diet, I could say "Spencer your bus is here, please turn off your game, and get your backpack." And he WOULD DO IT!! He would even go as far as letting himself out the front door and walk to the bus by himself! WHOA!! (I am in noway impling he is some super compliant kid, he is 8 years old and kids will do what kids want to do 90% of the time, he is no exception.)

Part of this step in the journey, it was suggested that we start giving him a smoothie. YEA RIGHT!! The kid who ONLY drinks milk or water! You have got to be kidding me, there is NO WAY he will drink a smoothie. But alas, I was challenged and I love a good challenge. Using his Spongebob PS2 game I sat in the floor with a smoothie (just strawberries, banana and blueberries) and proceeded to feed it to him. I got a big fat NO when I tried to give him the first bite. So, I turned off the TV..."Spencer take a bite and you can play your game" He took a bite! and it went like that for the first smoothie, tv off, bite, tv back on, tv off, bite, tv back on. Well, I am proud to say that today, I say "Spencer do you want a smoothie?" "Ess" (That's yes in Spencer talk) We proceed to the kitchen sit at the island and eat the entire smoothie (No bribery needed). Go SPENCER! Now the gross part, the smoothie today is a far cry from that first yummy smoothie! Who doesn't love a strawberry/banana smoother! We refer to it now as Spencer's Super Smoothie (he has 2 each day):
5 baby carrots
5 frozen strawberries
1/4 c blueberries
1/4c chopped frozen broccoli
1 scoop garbanzon bean powder (protein)-GROSS!
1/2t calcium
1/4t vitaspectrum (this stuff tastes NASTY)
1 probiotic pill
Sounds yummy huh?? :) Can you believe he eats this stuff willingly and actually prefers it over other regular food! Good thing, it's the easiest way to get in all those supplements.

Today, I can say the diet isn't really that hard if you have a Whole Foods, HEB, Central Market or other big chain grocer that carries organic products, you can pretty much find anything you need. It is time consuming...every Sunday I spend about 3 hours in the kitchen preparing food for the upcoming week for him. (Making bread, waffles, cookies, cutting fruit and veggies, etc.) It's a small price to pay for him to be healthy, plus I am learning so much about cooking/baking. (I don't cook and I never really even liked to cook.)


We went back to Thoughtful House yesterday and will blog about it tomorrow, too tired right now and lots to think about.