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Back to the Garden: Jack, 20, ASD

Discussion in 'My Optimal Journal' started by Kiersten Jarvis Webert, Apr 4, 2019.

  1. Hi all,

    This is my first entry for Jack. I have been Jack's step mom for the last 4 years and I love him dearly! I am responsible for all of his medical care (Dad works full-time to support us financially and has full physical custody/guardianship. Biological mom has not seen Jack in over 3 years and we think has a diagnosis of schizophrenia). I'm going to do my best with his history but will have Mike (dad) look it over for me this eve to add/make corrections. I am starting with genetics because he does have genetic variant that correlates with ASD and seizures, but we have never seen noticeable seizures (he may have them at a younger age). He had a 24 h our EEG that was normal last spring (but I don't have much faith in that).

    Haplotype K1A4A1A

    Genetic Variant: CHD2
    Diagnosis: ASD, Intellectual disability (chronological age 20/developmental age 10-12) IQ high 60s, Klein Levin Syndrome
    (KLS is a rare, complex neurological disease characterized by recurring periods of excessive sleep, altered perceptions, cognition and behaviors). I personally believe it is linked to his mitochondrial functioning but can't get any support from his doctors at the Mayo about this. It is triggered by an illness or allergy and has lasted from a few days to a few months per episode. In the past, it has happened 1-4 times a year since he was about 16.

    For more info on KLS: https://rarediseases.info.nih.gov/diseases/3117/kleine-levin-syndrome


    Sounded normal in all ways. No significant illness.

    Early life:
    Jack was breastfed for over a year and did not have any GI issues as a baby or chronic infections.

    Regression/lack of development: Jack began to decline around 1 1/2 and developed more abnormal reactions to sensory stimuli. He was very sensitive to light (which is reported with his genetic variant).

    Close to the age of 3 but did not need ABA to learn to talk, etc.

    Pfeiffer Center: for bloodwork, supplements

    Allergist: Jack is allergic to grasses which was a trigger for his Klein Levin episode last spring (he slept for up to 22 hours a day from May 9th-mid-July)

    Mayo Clinic: Neurologist Dr. Renault on and off for genetic testing; Dr. Kotagol - sleep specialist for KLS

    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).

    Interventions that helped: Jack made significant gains when placed on a GF/CF diet at the age of 3 1/2 and he has been off of those since that time. 3 years ago we added Fluoxitine for OCD/anxiety with good improvement in both (he used to turn lights on and off and repetitively wash hands - that is gone). We added a low dose of Lithium last spring for his KLS (it can prevent it in 40% of cases) and he is better on that, too.

    Fluoxetine 60 mg /day; Lithium 300 mg evenings/150 mg mormings, Singulair (allergies/inflammation) 10 mg pm, allegra in spring and summer (hoping to avoid the KLS triggers)

    Jack attends a transition program for young adults with autism through our school system.

    Jack is curious about everything, loves outings, games on the Wii (Mario Cart type) and on his phone. He plays adapted hockey in the winter and people love him because he is soooooo sweet! He loves yoga and has a really special faith in God.

    Energy! Jack has low energy even when he is not in an episode and often naps during the afternoon. He prefers being on the couch and it is hard to coax him outside for a walk. He can be inflexible when plans change and needs help with all ADLS (he would wear the same clothes every day). He is conversational but has some language processing issues and it's often hard for him to answer questions (he sounds a bit dysfluent). Like Elise, he is very vulnerable.

    Plan: (same as Elise posted yesterday)
    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.

    Thank you for sharing in any way with me!

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

    Ps. Here are 2 pictures of Jack - in the hospital last spring - we took him to 3 hospitals and finally the Mayo hospital before we got a diagnosis for his KLS. At first they thought it was episodic catatonia. His SPECT scan confirmed KLS late last summer. The other is our Jack NOT in an episode enjoying life.

    Attached Files:

    drezy likes this.
  2. Penny

    Penny New Member

    I think you're amazing... getting out of MN is a great idea - you are fortunate that your husband is on board with this also:)
  3. Thank you, Penny, so kind of you. I try my best and love them a bunch!! Indeed about my husband...So, so fortunate. It will be a challenge for him but honestly with all I know now I don't want him going to his office everyday either!! Last night we were researching Belize. :)
  4. drezy

    drezy New Member

    Good luck mam. Hats off to your efforts.
  5. Thank you! I've read a few of your posts and you are an inspiration to me - thank you for sharing your story here. It gives me so much hope.

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