Case Study of One Kainoa Chorman

October 8th, 2013

Dec05038Kainoa Chorman was born on 10.06.2002, and weighed in at a healthy 8 lbs, 14oz., with no birth complications.

On the average, he had 3-4 illnesses per year for the first three years of life, all treated with antibiotics.  He received all of his childhood vaccinations up until his 24-month shots.

He had roseola as an infant and then had three febrile seizures as a toddler.

His CAT scan and EEG were normal, and I asked his neurologist to start him on an anti-seizure medication after his third seizure (which we later weaned off when he turned six).

He had normal development, walked early / minimal crawling and was a happy baby, but never slept through the night, walking up 2-3 times a night to drink formula/milk and had trouble falling back to sleep.

He was a late talker with only 10 words at one year of age and had the same 10 words at two years of age. Then, the “behaviors” started, terrible twos carried into tantrums at three and there were days when he would tantrum most of the day.

Our pediatrician referred us to early intervention and Kai was tested and diagnosed with global developmental delay.

He started speech & occupational therapy 3X/week, which produced no real gains.

He was then diagnosed at three with PDD-NOS; although the psychologist made reference that he was borderline “autistic”. Hurray! We thought he is not autistic…

May2006076At the age of three, he transitioned in to the Department of Education and spent 10 months in special Ed Preschool with minimal progress in speech and behavior.

                 He now had a total of 40 words at 4 years of age.

He continued to have poor sleep, limited food choices, tantrums, and inattentiveness.  It was like he couldn’t hear us as he would not respond to his name or requests and was in his own little world, lining up toys and shredding anything that was shred able.

We started searching for appropriate schools and found the Pacific Autism Center, and we placed him there just before his 4th birthday for intensive ABA Therapy, 42 hours a week 1:1, at DOE expense.

We had him evaluated again & he was then diagnosed with autism and verbal apraxia.

After searching the internet and talking to any and every parent I could find who had a child with autism, we started biomedical interventions.

  • Cod Liver Oil/Omega-3 was the first supplement I tried and we had our First Wow! I can remember thinking that Kai’s language was slightly improved and I couldn’t believe that was possible from just starting Cod Liver Oil.  I was convinced that we could help our little guy and we were officially on our way to our journey into the world of autism.
  • Then we started on “diet”…gluten free/casein free (aka GFCF). Every parent thinks the exact same thing when told to start the diet…Oh my God; my child will starve because all he or she eats is milk and wheat products.

June05186Like any diet we all have tried, my fellow ladies, it is hard (and no fun) in the beginning and then it gets easier to the point that it really didn’t seem as hard as you thought it would be.  The most amazing change we saw early on was once Kai was GFCF, it was also the first time he slept through the night, since he was born! That was a huge accomplishment for the entire family!

  • The next dilemma was finding a biomedical practitioner or as they used to be referred to as Defeat Autism Now Doctor (DAN Doctor).  Even though we were living in the middle of the Pacific Ocean, on the Island of Oahu, we had only one naturopath who was practicing under the Defeat Autism Now Protocols. One was all we needed.
  • She started Kai on special formulated multivitamin/mineral supplementation and over the upcoming year we:
  • DID LABORATORY TESTS

IMG_9327
–        Tested positive for food allergies( Kai had a sensitivity to gluten, casein and soy)

–        He also had gut bacteria , which we treated over several months and

–        Had tested positive for heavy metals – primarily lead and mercury, which we would start treating once we  cleaned up his system

  • In addition we started, probiotics daily, tried B-12 injections for six months, no real improvement noted so stopped after 6 months. Started on glutathione (an antioxidant). Gave Kai GABA for calming and better sleep. Started mineral supplementation, calcium/magnesium and zinc based on laboratory tests:
  • In addition antiviral and antifungal were given and then…

    This treatment list is being shared for educational purposes only. It is not intended as medical advice. Please seek assistance from your health provider regarding any treatments that could be available for your child based on his/her unique needs. What is a Treat Autism Chart?

    This treatment list is being shared for educational purposes only. It is not intended as medical advice. Please seek assistance from your health provider regarding any treatments that could be available for your child based on his/her unique needs.
    What is a Treat Autism Chart?

  • DMG – Our Second Wow! Unbelievable, Kai’s was talking more…significantly more with the use of DMG…it was such a noticeable improvement everybody who knew Kai noticed!
  • Over the next couple of years, we continued on anti-seizure medications, first Keppra, then Lamictal, liver support, low-dose Naltrexone (Mood) and then our Third and Final Wow…
  • Chelation – which is the removal of heavy metals from one’s body, we used Chelated Kainoa for 18 months straight, starting with DMSA (cream and then suppositories), EDTA and then DMPS.  Once Kai starting excreting the lead, the fog lifted and he was now “with the program”, actually interacting and responding to and with us! It was what every parent, with an autistic child hopes for.  We would not be where we are today if we did not Chelate Kainoa.

There were still a couple of interventions that we really wanted to try. So we started HBOT – a hard & soft chamber, and initially with a goal of 100 hours under our belt, we ended up completing 240 hours of Hyperbaric Oxygen Therapy and Kainoa would display mostly behavioral and social gains after each block of HBOT.

  • To round out OUR therapies we tried craniosacral therapy and then allergy elimination treatment – advanced allergy therapeutics – and then we stopped the diet, now he eats anything and everything. Although to this day, he does not like the taste of milk, SAYS it tastes “dirty”!   Hilarious!!!

Our education trials and tribulations started when we:

Filed due process when Kainoa was four and we ended up settling with the Department of Education which entitled Kai to stay at Pacific Autism Center – 42 hours/week, receiving 1:1 intensive ABA, year round.

Year two, we filed again and “won” our second year at Pacific Autism Center, we won on procedural error of the Department of Education.

Year three –we went to mediation and decided to transition Kai back in to DOE which was being overseen by the therapists AT Pacific Autism Center for kindergarten.  He continued to receive 1:1 ABA therapy three hours a day after school.

Year four –we mainstreamed into regular 1st grade (no shadow) with speech therapy, and fast-forward supports, we also worked with DOE as Kai was starting to struggle with reading.

For the second grade – he was in a regular class room, receiving  speech therapy one hour/week, worked ON fast-forward for one hour every day before school started for 2 years, had a reading/cognitive language program for 2 years (OG tutor 1 year), …diagnosed dyslexia/ADHD (inattentive type).

Third grade/fourth grades – placed at assets school (specialized school for gifted/dyslexia/ADHD), reading as improved, had some social issues that have been worked through and resolved…learning about interactions with friends – teasing, bullying, etc(counseling and therapy).

CCI08182013_000032013 now starting fifth grade - completed six weeks of Linda mood Bell tutoring this summer (V & V, and seeing stars – his reading was tested at grade level at the end of sixth week of tutoring).  Will spend one last year at assets school and then plan to mainstream into a small private school for sixth grade.

This is what I tell all parents what we did and is why I think Kainoa made such great progress:  intensive behavioral therapy and aggressive biomedical interventions.

  • Early intervention IS KEY!!!
  • Never give up, any improvement is a step in the right direction
  • Persistence, hard work & determination.  Treating autism is HARD, EXPENSIVE and LIFE CONSUMING, but I would do it all again if I had to.
  • Support is absolutely necessary to stay sane – TACA parents, read books, search the internet
  • Stay positive – surrounded our family with people who support our efforts, ignore negativity and skeptics

We finally did a follow up with a biomedical doctor this past year that referred to Kainoa as neurotypical. He has good eye contact (not perfect), good compliance, occasionally emotional but is a big marshmallow at heart. Kai currently has friends, plays soccer, flag football, surfs and swims, and enjoys singing and dancing. He also loves to talk, nonstop…who knew? He will admit that he can talk your head off!!!
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  • He continues to take daily supplements (CLO, DHA, Carnitor, Multivitamins, probiotics, zinc,cal-mag, DMG, Taurine, CoQ 10)

As a measure of improvement, Kai’s initial ATEC score was 67 in 2006 (and looking back it was probably higher as we tend to score our children slightly lower when we are newbies to autism).  His follow up ATEC in 2009 was a score of 6, today ATEC is zero!!!

In all seriousness, I thank God every day that Kainoa was a responder to most of the treatments we tried.  He is an amazing kid and I genuinely enjoy spending time with him. I am convinced that he will do great things in his life as he is already doing great things at the age of ten!

 

To see more of Kai, here are some YouTube links:

http://www.youtube.com/watch?v=426tIOS3Jdk

http://www.youtube.com/watch?v=7MR91ZI_6tk

http://www.youtube.com/watch?v=udb9EFoQxf8

 

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