Monday, October 18, 2010

Carson update...the good and the bad - October 18, 2010

Carson has been a very busy guy lately and we wanted to fill you in on the latest. For months we have been using all sorts of supplements to help him with nutrient deficiencies and to aid in healing his gut lining. It has been one massive science experiment because unfortunately, any new substance that is introduced into his system causes his body to rebel and he develops an intolerance to the substance. For the most part the supplements were causing the distended gut and brain fog because his intestines couldn't digest them properly, causing toxins to directly enter the blood stream.

For months, Dr. Bain (Carson's pediatrician) has been talking about a test called the "NutrEval" which is a comprehensive nutritional evaluation providing assessment of:

- Oxidative Stress

- Organic Acids

- Amino Acids

- Essential Fatty Acids

- Toxins

- Nutrient Elements and Absorption of Vitamins and Minerals

We were anxious to have this test run as well as shed some light on his situation. The requirement was to get Carson off of all of his supplements for 5 days before taking the blood and urine sample. After we took him off of everything we started to see some amazing and unexpected results. I have had several people suggest that maybe just turning 2 is the reason everything clicked. While that may be a part of the equation, his progress is astounding and has to be linked to something more than just turning two. We wondered if it could be the supplements, so I decided to take him off of the "extras"-- the supplements I didn't think were absolutely crucial. Suddenly he stopped spinning in circles. I mean he completely stopped. He used to spin in circles all the time. He became much more interactive and his speech ability blew us all away. He went from counting to 10 and saying a few repeated words to:

- clapping on command (this is a HUGE milestone)

- saying thank you appropriately

- identifying and verbalizing the correct shapes in various situations

- he started saying words that are in context (we went to the park and he started saying "eel" for wheel while playing with a giant wheel)

- he started repeating words and using them correctly (good job, "Rachel", train, choo-choo, night-night, etc.)

-he started dancing to music

-he started sitting and focusing on simple tasks and games

As you can see, his progress has been remarkable! We are so excited and proud of him. In fact, his Occupational Therapist cried at our session this morning because he has improved so much. Go Carson! Such great news!

The bad news is...the lab reports were terrible! His GI bacteria is so high and off the chart that the lab actually ran the test an additional time because they didn't believe that the results could be so high. After running them again they found that the results were in fact accurate. I won't go into the 52 page detail, but I can explain what I know:
- He has leaky gut (many kids on the spectrum do)
- He has issues with high levels of bad bacteria and yeast (which destroy the lining in the intestine)
- He is unable to breakdown and digest food correctly
- He is completely malnourished
- His PH levels are extremely off (creating a toxic environment for all of his organs)
- He lacks the vitamins and minerals (amino acids, antioxidants, etc.) necessary to properly grow and develop.

It's one big crazy cycle! I am confused as a parent because I see the need for these supplements, yet I've watched him "wake up" from us removing them. I don't want him to starve but I do want him to speak and respond. There isn't an easy fix to this. The pediatrician told me that this isn't due to what we are feeding him, these levels are a reflection of a toxic environment. She said it was one of "the messiest lab results" she's ever seen. Lovely. His disease risk is a 10 (10 being the highest). His GI dysfunction is at a 9 and his levels of acids were shocking. Let's say 50-100 is the "normal" reference score, his levels were 2,800-3,000! Insane.

I even took the 52 page report to our Neurologist/Chiropractor, Dr. Rosenthal. He ALWAYS seems to have the answer (or a theory or an opinion) and he said, "This is way beyond my scope. This is scary. These numbers indicate there is a huge problem and you need a champion to take control of this situation."

Who is that hero? I am asking and begging for real prayers! For answers...we are struggling to find the right physician. Insurance doesn't cover the doctor we really want to see and his prices are outrageous. At this point, we don't care...we will live in an apartment if we need to. All we care about is getting our son well.

I am so excited to see the amazing progress Carson has made, but I am also anxious and scared because I know every day that passes is another day he lives in a toxic body. Please pray for our family to be blessed with knowledge, clarity, patience and healing.

"Do not go where the path may lead, go instead where there is no path." -- Ralph Waldo Emerson

"I pray that God, the source of hope will fill you completely with joy and peace because you trust in Him. Then you may overflow with hope by the power of the Holy Spirit." -- Romans 15:13

1 comment:

Sally said...

ahhhhhhhhhhhhhh!!!! sweet melfa.
so many thoughts going through my mind...

1.) what a roller coaster to be on!!! you take him off the supplements and he seems to be "back" and then yet, his levels are just off the charts! why?????? UGH. i know it must have been so encouraging to see him make progress, and then yet, get the bad news that he does in fact, still need those supplements to help balance his levels. (that is what i got from that...please correct me if i am wrong!) :)

2. can i just say, i just don't know how you are getting through this. well, yes, i do know, bc Christ is right beside you, holding you up, encouraging you at every dead end. what would we be without HIM??? so proud of you ( i know i always say that) but i just think i would crumble trying to tackle such a beast. yet you remain composed, strong and such a stud, doing the best you can for Carson. I LOVE YOU and am so encouraged by you Mel!!!!

3. Our family will join with ya'll in praying for direction for a dr that can help give you clear direction for what is next, and most importantly, what is best for your sweet son.

thanks for the update. that was definitely the best way to get out all those details to a huge following of people curious as to how your day went. :)


i am here for you ok. i love you, and want to encourage you to keep on truckin', putting one foot in front of the other. His mercies are NEW each and every morning. cling to that sister!!!!!!!!