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Back to the Garden: Elise, 21, ASD

Discussion in 'My Optimal Journal' started by Kiersten Jarvis Webert, Apr 3, 2019.

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  1. Hi all,

    This is my first entry into this journal. I am Elise's biological mom and I have been trying to help her reach her full potential since she was diagnosed with autism at 2 1/2. I have another biological son with autism (Ben - 2 years younger than Elise) and he has been living in VA with his dad because he became to big and violent for me to dress him, care for him, keep him out of the street - it was a nightmare and I miss him every day. I'm going to focus just on Elise because their history is identical, but I will refer to him at times in the history parts. This is the succinct version of the last 21 years for Elise:

    Pregnancy:
    I was 28, working in the inner-city with preschoolers, sick with multiple viruses (colds, and diagnosed in a hospital with pleurisy in my second trimester; antibiotics) during my pregnancy. Avoided the sun the entire pregnancy (I had been convinced all the sun tanning in high school I did was going to give me skin cancer and was afraid of the sun at this point in life). I lived in MN, so I'm sure D deficient - didn't know about vit D then. Delivered Elise at full term Feb. 2, 1998. Needed Pitocin.

    Early life:
    I was not able to breastfeed (I had breast reduction when I was 17 - wasn't thinking about breastfeeding at the time :( ). Elise did not tolerate any formula well - GER, constipation, miserable. Eventually on Nutramigen.
    Meds: Dr. put on Prilosec and Zantac for reflux
    - multiple ear infections from 3 months-12 months; multiple rounds of antibiotics, 1st set PE tubes at 1 year
    Meds:lots of Motrin during teething and ear infections - did help with irritability at the time but obviously further destroyed her GI tract (it's actually hard to write this and revisit the train wreck knowing what I know now).

    Regression: Elise regressed after every virus/infection (early on lost social skills she had and affect); became more and more anxious and fearful, sensory issues became apparent, very irritable, language did not develop typically but GM skills seemed WNLs at the time

    Diagnosed
    at 2 1/2 - began ABA (Applied Behavior Analysis) therapy at home (20-30 hours p/week)

    1st specialist:
    Dr. Jyonouchi at the U of MN who was researching autism and put her on Singulair and Vioxx for high levels of proinflammatory cytokines (her TNFa was off the charts among others); also GF, CF SF diet; Speech Language, OT, etc.

    Biomedical Hx - searching for answers and help:

    Began working with DAN doctors at the age of 4 and followed many protocols while doing ABA (until age of 7-8?) after no real improvement with regular pediatrician or U of M

    Began with Dr. Edelson in Atlanta (moved there for 3 months) and tried detox using infrared saunas, exercise and IVs (GSH, etc); removed all plastic from our home and tried to live as chemical free as possible (bought a sauna for the kids at home and continued after our return), tried root and wild game rotation diet, special water, etc. (not much better but always improving slightly with ABA therapy so hard to tease out)

    Dr. Amy Yasko: consulted with her for a couple years about 10 years ago now??? Have all the nutrigenomic testing from back then and currently have 23 & me

    Dr. Bradstreet in FL (moved to FL to work with him for a year); ABA and HBOT (no improvement from Elise, Ben was much worse/more aggressive during and after).

    Dr. Zimmerman and NIH (moved to VA/MD) Saw Dr. Zimmerman (neurologist that did fever research at John's Hopkins) and participated in a study at the NIH for Minocycline (didn't help)

    Mayo Clinic: Neurologist Dr. Renault on and off for genetic testing; tested all X linked possibilities, chromosome array - normal. Last year completed a full-genome sequence (normal).

    Most recently - Jan 2019: Dr. Nemecheck, AZ: kids are on Epi-Paleo diet and Dr. Nemecheck protocol (started with a round of rifaxamin, 2 tblsp olive oil daily, 3000 mg DHA, and tVNS [5 min day at 10 hz] via the ear).

    Setback this winter and current meds:
    Elise had been on Abilify, Vraylar and fluoxitine for a few years and developed EP symptoms, waking at 2am and restless legs, mild dystonia in right foot, etc. Took her off Vraylar, titrating slowly off of Abilify. Began to research alternatives to meds and found Dr. Kruse/red light therapy, etc... mood has been very challenging during this time...which brings me to today...

    Currently:
    Elise attends a day program for young adults with autism which is community based - mostly simple volunteer work, community outings, vocational support (when she is ready and they find something for her - which wont be an issue given our plan), social activities, etc.

    Verbal IQ is in the low 60s and nonverbal IQ is in the low 50s; she reads at a 3rd grade level, writes texts and FB posts, math at 2nd grade level but can compute addition/subtraction quickly in her head and memorizes birthdays and other dates - knows what years things have happened in her life back about 10 years

    We are blessed that Elise is conversational and has a wonderful heart. She would be considered in the mild-moderate range of autism and has friends (similar to what it would be like in 5th grade??). I'm beyond grateful she come this far but...

    Challenges:
    Often glum (very flat affect), uninterested in anything new, has no curiosity, very perseverative (only wants to plan dances and look at prom dresses, etc. - can't find any med to help with this); very short attention span, restless/akethesia (still), anhedonic, poor social skills (obviously), anxious, mild sensory issues, etc.

    Plan:
    Husband and I are looking into moving to a tropical region for at least Nov.-May every year and may move permanently after we see how it goes. We have a cabin about an hour north of the city on a lake, low density and no wireless that we can use this summer while we research. We are going to be selling our "regular" house (southwest suburb of Mpls. and just getting 5G installed in our neighborhood). I am researching the winter escape now and we will rent for a few years before buying anywhere - maybe trying different locations. Looking for sunshine, beach and safety for the kids.

    Just started with:
    Red light therapy (we have a spa that has a bed that we take the kids to but it's not ideal)
    We all have blue blockers
    Phones and computers have blue blocked
    Lights in the house are turning red - lol- and no lights on at night
    Ordered magnetico last week - on way
    Husband is mechanical engineer and works at firm with electrical and mechanical engineering so he's figuring out how to make our own red light bed and has all kinds of measuring gadgets from work for EMF, light spectrum etc (I'm just learning)
    Trying to spend as much time outdoors as possible (laid in the sun on the deck off the bedroom in 41 degree weather last week but no wind so bearable)

    Other things:
    Epsom Salt baths
    Try to be as keto/paleo as possible, no sugar, etc.

    Genetics:
    Haplotype B2b


    SNPs:
    COMT ++ (H62H and V158M) (too much dopamine, PMS, etc)
    MTHFR F435F ++
    MTHFR A222V/C677T +-
    ACHY L135T and R38W ++
    SUOX L300L and S370S ++
    VDR Taq and Bsm/Taq +-
    APOB-X ++
    SOD2 A16V ++
    GSTP1 I104V ++
    ACE Del16 ++

    Thank you for sharing in any way with me. I will add more later but wanted to get a start on this. I have all the 23 & Me data for genetics and do labs usually about once p year so I can post those results as well, but they are about a year old now so prob better to get fresh labs. I will also post this eve for my step-son, Jack, who has a genetic variant and obviously different cause of ASD. I want to keep their journeys separate so I can keep track of them more easily and keep their data separate to avoid any confusion.

    With hope, gratitude and sunshine,
    Kiki (my family calls me Kiki)

    Ps. Elise is in the middle of this picture - between a friend and her step-brother, Jack.




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    Last edited: Apr 3, 2019
  2. Novah

    Novah New Member

    This woman might be someone to connect with - She has an Autistic son who's doing really well now - she also moved her family to Maui from the mainland. http://www.lyndsykarrie.com/about/
     
  3. Thank you, Novah! I will connect with her...
     

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