Supplements

When we started seeing the Autism Specialist it was overwhelming to say the least. After our first visit (that lasted over 5 hours) my husband and I were so drained we came home and crashed. We had gone over Brei's entire medical file page by page trying to determine what testing needed to be done. It's hard to really think about more testing when to this point you've felt like your child was a pin cushion with all the testing.....and that testing never resulted in any real definitive answers. We were hopeful that this would be different. But we weren't like "overly" hopeful because we didn't want to get let down. We had learned from past experiences that it was emotionally draining to get too excited about anything relating to Brei's health. So, we did the testing...little by little. It's all out of pocket expenses....ALL OF IT. So, we had 9 tests at between $150.00 to $350.00 each, plus the cost of any blood tests that needed done at the hospital. We were so lucky that insurance covered some of the blood testing. I remember I was so overwhelmed at the cost but couldn't think about it because I just felt in my heart that God had led us to this doctor and that he would provide the money needed.

So, little by little we got the testing done and went for a follow up with Dr. Demio. Brei's little body was overloaded with heavy metals and toxins. So we started learning about detoxification and chelation to pull this stuff from her body. We also learned that her body doesn't absorb nutrients like the majority of the population. She holds on to the bad stuff and all the good stuff just seem to get flushed out. Her gut was a nightmare of bacterial and yeast overgrowth which was blocking neurological function. She also carries strep in her intestines and yeast loves strep...it holds onto it. FUN! I decided I'd better start researching yeast and all the behaviors that go along with it. Wow, I mean I think you could go to college to be a yeast specalist or something. That would help a lot of families...no time for that though, because after the first appointment I came home with a list of 22 supplements/prescriptions that we would be starting Brei on to get her better. To cure her and recover her. WOW! Did someone say cure and recover? I thought I maybe didn't hear the doc right......but then he said something amazing to me....He said, "We are going to get OUR girl better." He acted as though Brei was his. Well, that's important....because if he cares for his patients as though they are his then he is going to go the extra mile for them.

So - we come home....list in hand, notebook full of reading material and a phone appointment to talk with the supplement guru to learn when to give this stuff. Here's a sample schedule of a day in the life of Brei in terms of nutrition.....

7:00 a.m.

Kirkman's Folinic Acid

Custom Probiotics

Lee Silsby Amino Acid Powder Blend

7:30 a.m. - tube feeding

(with tube feeding in separate bolus)

Enansa Curcumin Powder

Kirkman's Cod Liver Oil

Complementary Prescriptions Biotin

Allergy Research Group Molybdenum

Allergy REsearch Group Selenium

Kirkman's Calcium

Nystatin Dose #1

Digestive Enzymes

Glutathione Cream (rubbed on shins)

9:00 a.m. - water bolus

10:30 a.m. - tube feeding

12:00 p.m. - water bolus

1:30 p.m. - tube feeding

(in separate bolus)

nystatin dose #2

Calcium #2

Digestive Enzymes

3:00 p.m. - water bolus

5:00 p.m. - tube feeding

8:00 p.m. - tube feeding

Amino Acid

Enhansa Curcumin

Biotin

Molybdenum

Selenium

Calcium

Nystatin

Enzymes

Custom Probiotics

Glutathione

B-12 injection

ARE YOU KIDDING ME????????????????????????????????????????????????????? Um......how much is this going to cost? And when am I gong to learn how to do all of this and remember what to do when? So I came home and sat on the idea for about a week. I'm not kidding. It was so overwhelming I just had to sit on it for awhile. I had 4 pages of when to start and what dosage...I mean I couldn't start all at one anyway, it had to be little by little not to shock her system. I created an excel checklist for every day for a block of 2 months. I took detailed notes of every reaction, behaviors that got worse, better, how often she puked up her feedings etc. We consulted with doc and he would tweak dosages here and there when my notes indicated that things were not adjusting well. Once we got her on the dosage/schedule that worked best for her based on my AMAZINGLY DETAILED note taking we set the schedule and watched for 6 months to see how she responded and then did ANOTHER ROUND OF THOSE REALLY EXPENSIVE TESTS. YIKES! Am I gonna have to sell my home to pay for this? I didn't care at this point....there weren't any tears left in my body to concern myself with my financial future....I mean, I'm a selfless person, but putting aside any though of a savings account or retirment for the good of my daughter's health made me worry a bit. And I didn't have time to find a scripture at the time to help me with my worry. I knew I wasn't supposed to worry, I knew that verse was somewhere in Matthew and I knew that God would carry me through. I knew he'd forgive me for not grabbing my Bible up right away to read. I was buried in books about nutrition and holistic health. And I still worried, even though I knew I wasn't supposed to....I did. I'm human and we humans tend to just throw God's word right out the window when the going gets tough. It's so easy to tell everyone else how to respond when they are in crisis you know? But when we are in crisis isn't it a whole other thing? We wanna waller around in our crisis and feel sorry for ourselves for awhile. Of course that just prolongs everything (I'm doing better with that now by the way).

So - after our 2nd round of testing we see that Brei's body isn't detoxifying like it should be. We up the curcumin dose, change some of her food around, add more B-12 injections, change her yeast prescription, and add EDTA cream which should aid in the chelation process. Note: This was a very mild chelation as he didn't think that Brei could handle a full blown chelation at the time. So I knew things would go slow, but I just wanted a urine test to come back with some mercury in it. Her blood tests showed so much Mercury it was scaring me that nothing came out in her urine. But, that had happened so long ago that the damage was done anyway.

We adjust the supplement schedule and start selling off our organs to pay for them (sarcastic tone) and then do the 3rd round of you guessed it..REALLY GROSSLY EXPENSIVE TESTING THAT INSURANCE DOESN'T PAY FOR. By now, I've completely adjusted to this unbelievable expense and I'm seeing so much improvement in my daughter that I'll live in the trunk of a car if it means my daughter has a better life. God was still providing...every month, the supplements were paid for...every month...can you believe it? Just like that, after paying all of our bills...we still would somehow miraculously have the over $900.00 needed to buy her supplements/prescriptions. Now really, I don't know that many people who spend an extra $900.00 on anything at the end of every month after they've paid all their bills...I was becoming completely ok with this....

So - at our next visit......HEAVY METALS ARE IN HER URINE! What? Are you kidding? It's working? It's WORKING!!!!!!!!!!!!! I knew it was working before he even told us because she had started saying a few words and making more social connections with people. She was improving all the time.

So during this entire time with the supplement drama...we had changed Brei to the Gluten Free/Casein Free diet. That was probably the hardest thing I've had to do. Thank goodness for Holly, Tonya and Whole Foods. We all kind of went on this journey together. We re-learned how to grocery shop and read labels and cook for that matter.

I knew intantly that Brei had a gluten intolerance because when we took her off of the gluten she went nuts....I mean....hello Betty Ford Clinic. This was going to be a full on detox. She really was addicted to the gluten high and she wasn't going to give it up easily. She would find gluten everywhere to get her fix. She would lick grocery carts at Kroger, doorknobs, windows (hello Windex has gluten), and floors. Did I mention...toilets. Yes, I said that out loud. Gross I know...but hey, my kid, well, she, uh. has autism...and polymicrogyria...and well....she's different, I'll say that. She's different...but she's mine and I'm gonna get her better if I have to go to the poor house doing it. So, the detox off of Gluten took 4 months. The longest months of my life. It was downright scary watching her break her gluten addiction.

So - now we are 2 years into this whole autism world. It's not so scary now...I mean that seriously, it's just NOT scary to me anymore. I mean there are scary moments but I feel like we've gotten Brei to the other side "health" wise and now we can tackle the sensory/social stuff, the developmental stuff. We can start making strides like...say....getting dressed....I mean, with help she can take off her shirt and pants...with a lot of help. But now that we have the health and nutrition down to an artform, I have time to work with her on just day to day stuff like holding a tooth brush, taking off socks, walking up and down stairs, holding a brush, learning how to bathe. Just day to day things that so many folks take for granted. My kid can't do those things. She tries her hardest but the motor planning/neurological piece is so delayed that her body just doesn't do what she wants it to do. Man it's frustrating I won't lie. I want to just say "hey Brei, run into your room and change clothes and get ready for school." But she can't, without help. And some morning I just want to be lazy...but I can't. I want to have a normal 6 1/2 year old who can do those things for herself. But I don't....so I have to teach her. I have to work with her over and over and over until she makes the connection...and she will someday, no doubt in my mind. Hopefully by the time she's 12 or I might just shoot myself (totally sarcastic here). I wuld never do that....she needs me here, with her, teaching her so that someday she can function in this crazy world....that brings me to a whole other thought....acceptance....for another day.

My kids are lounging on me so I think it's time to be finished.

The photo was taken at Bonnybrook Farms in Clarksville and she's pictured with her two good buddies Will and James. They are in her class at school and also are in her Little Hearts Big Smiles family.