July 2013 Public Comment to Federal Autism m Committee

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My Public Comment to the July 2013 US Federal Government’s Interagency Autism Coordinating Committee.

Submitted: May 01, 2019

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Submitted: May 01, 2019

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Written Public CommentsI
ACC Full Committee Meeting
July 9, 2013

Submitted June 26, 2013

Subject: Co-occurring conditions associated with autism

The IACC strategic plan for Autism research, back in 2011, acknowledged the need to better understand the scope and cause of co-occurring conditions, and the need for multidisciplinary heath assessments and effective treatment guidelines. In response, I wish to inform the Committee about those co- occurring conditions my daughter faces, and what has made a difference in her health and developmental trajectories, and ultimately, her outcomes.

My first comment (and I hope this will not stop you from reading the rest of this letter) is that there are certain newborns and infants who should not receive vaccines; unfortunately, though we recognize in the AAP guidance that children with metabolic challenges, autoimmunity, and mitochondrial dysfunction should not be vaccinated until they are stabilized, we are vaccinating all, with impunity. I have two children, who are not related, who are suffering from adverse outcomes after vaccination; my eldest is adopted, the other is my natural child. My younger child got her vaccines at 6 months and stopped breathing while still on the exam table, before I even got her dressed!  She was resuscitated and brought to the hospital, where, after a number of hours and treatments, she was discharged with a diagnosis of Severe Asthma, covered in eczema, and given prescriptions for hourly nebulizer treatments with Xopenex, liquid Albuterol, steroids, allergy medicine, and an inhaler (puffer); there is no family history of Asthma, however, autoimmunity is rampant. She has recovered from the eczema and we now have the Asthma under control, but she is left with mild AD/HD; it has been nearly 12 years since her adverse event.

My eldest received her vaccines at 3.5 months, left the appointment screaming, screamed for numerous hours, and finally crashed into sleep which lasted six times longer than normal, when she awoke, she did not want to eat, and when I went to change her diaper, her legs fell to the changing table when I let them go; the doctor’s office told me this was not of concern and to continue to give her Tylenol. We continued to have almost every symptom on the Vaccine Information Statement, to which the doctor’s office always responded that we should not be concerned; until she hit the symptom on the VIS that was linked to the directive, “Go to the hospital,” nine days after vaccination; she shrieked in a non-stop, high pitched wail for numerous hours, despite every effort we made to calm her. At the hospital, the VIS was thrown in the trash, the hospital generalist gave us a prescription for Amoxil, and we were dismissed.

My daughter never recovered from this event, and with each new set of vaccines, sunk further and further into poor health, failure to thrive, and the behaviors we use to diagnose Autism. By age 2, she was diagnosed with Severe Autism; the Developmental Pediatrician told me, “She has Severe Autism, she will never speak with intent or toilet train. She is cute, now, but by the time she is 5, she will need to be institutionalized. You need to get her onto a wait-list, now;” I immediately sought information from every Journal I could get my hands on, and began to pursue more information to understand what was at the root of the symptoms which had earned her this diagnosis. We saw numerous pediatric specialists, including neurology, endocrinology, developmental ophthalmology, orthopedic, and more. We found a pediatrician who had decided to focus on helping children with Autism by addressing their symptoms by determining their root causes. We found a group of parents traveling the same road, and worked together as a community to share what we knew, what was working, and what seemed dangerous or hopeful. As recently as when she was 5, I was informed by the School District that she was “retarded and in-educable.” The problem is "Autism" is not a psychiatric disability - it is a medical disability. Her epilepsy, antibodies to her own myelin, hypotonia, mitochondrial dysfunction, hippocampal sclerosis, irreparable vision disturbances, hypoxia, heavy metal toxicity, global developmental delay, failure to thrive, and many other diagnosis' work together to create her "Autism." She was not born with these disorders, she developed them, starting with the neurological event following her vaccines at her 4-month "well-visit!" She does not have autoimmunity, but she has metabolic dysfunction of low Biotinidase and low Carnitine; according to the AAP guidance, she should have had these levels stabilized prior to vaccination – they were not identified, nor addressed.

She was born, perfect, at 42 weeks gestation. She was meeting and exceeding expectations up until she was 3.5 months old (4 month “well visit”). After this, she descended into: head banging, drooling, screaming for hours on-end, not sleeping, having copious putrid diarrhea upward of 7 times daily, being covered in rash, driven to pica, and grew to be non-verbal and elopement-prone, and more.

Mainstream medicine was willing to simply throw her future away. Had I listened, she would now just be considerably bigger and less controllable with all of these issues.

We opted to pursue “recovery.” Her “recovery” moves slowly, but surely, forward, using the pillars which include Organic, Allergen-free Nutrition (to address her core health and assure her regular participation in behavioral therapy), Daily Intensive Behavioral Therapy to enable her to learn EVERYTHING (self-care, safety, eating adequate amounts of food, how to play, understanding social cues, learning to speak, learning to toilet, learning to take pills, learning new words, learning to pay attention, learning to control impulses to stim, learning to learn, and so much more – all the things “typical” children just pick-up naturally) – she has logged 17,000 1:1 hours of the therapy so far, Supplementation to address neurologic, gastro-intestinal, metabolic, and other imbalances (this allows her to participate successfully in the mainstream world), and Quality Inclusive Education which sets the academic bar high and utilizes measurable milestones which address independent functioning, social capability, academic and life skills (this enables her to develop the skills she will need to reach an independent and capable adulthood). My child, destined to “never speak with intent or toilet train” at 2 and deemed “retarded and in-educable” at 5 is now almost 14, she is toilet trained (and preparing for her period), fully verbal, on age-level academically, behaviorally able to hide her Autism from strangers, sleeps 10 hours each night, swims on a swim team (though she is not competitive, due to her metabolic challenges), rides horses independently, has friends, and is getting excited about maybe being able to get her driver’s license in a few years, going to high school, and maybe having a boyfriend; yes, she still has “Severe Autism” and permanent brain injuries and myriad dysfunctions, but she is learning to compensate, work-around, and make-do with what is left.

Her diagnoses include:

Biotinidase deficiency,
Carnitine deficiency (Free and Total), Global developmental delay
Severe Autism
Frontal and Temporal Partial Complex seizure disorder
Convergence disorder (she closes one eye to deal with this and vision therapy made no difference) 
Hypotonia
Hippocampal Sclerosis, GI dysfunction
Tibial torsion
Motor planning disorder 
Apraxia
Antibodies to her myelin (MBP)
IgM to her brain endothelial cells
Heavy metal toxicity
SPECT scan shows deep frontal ictal activity/ring of fire/and other misery
Allergy tests positive for: gluten, casein, soy, pork, beef, apple, canola, potato, nightshades, tomato, egg, and citrus

Additional labs have shown:

Elevated Propenoyl (C3:1), elevated Tetradecadienoyl (C14:2) Elevated plasma ethanolamine (component of myelin)
Low zinc compared to copper level
Despite over 1 year on a Mito Cocktail, first biopsy (sample too small, all tests ordered could not be performed) showed atrophic Type II myofibers, and a clear excess of lysosomes, and prominent lysosomes.
Despite over 5 years on a Mito Cocktail, second muscle biopsy shows her Complex IV Freeze/Thaw is below the 5th percentile
She has far too many mitochondria Elevated oxalic
Elevated suberic Elevated citric acid Elevated Kynurenic Acid Elevated glyceric acid Elevated succinic
Low arginine Low isoleucine
Low urine values of: asparagine, isoleucine, phenylaline, tyrosine, ornithine, lysine, threonine, 3- methylhistidine, and arginine.
She also shows low serum IgA
Regarding hepatic function, she has shown low total protein and high Alk Phos and AST She has consistently low CO2
Consistently high MCV and BUN/Creatinine ratio Elevated alanine and 2-aminobutyric.
Elevated lactate to pyruvate ratio.

What we have done, which has resulted in her emerging from rashes, not sleeping, self-abusive behavior, elopement, food refusal, failure-to-thrive, hours-long screaming jags, behavior which endangered others, being non-verbal, not toilet-trained, and reducing and/or eliminating the many other behaviors known as “Autism:”

  • We are (and have been, since she was 2) GF/CF/SF ALL ORGANIC
  • Purified water for drinking, cooking, bathing
  • No chemicals in our home
  • Early Intervention: Speech/Language, Occupational Therapy, Physical Therapy, Behavioral (total of 6 hours a week for 1.5 years) – would have been more beneficial on the GF/CF organic diet & supplements – she was dismissed because she was not deriving benefit
  • Speech/Language Impaired Public School classroom with Speech Language Pathologist as teacher (2 years) – useful, but not as effective as the ABA/VB/PBS/DTT, below (which incorporates ALL therapies); she was on GF/CF organic diet and supplements for this period
  • 1:1 ABA/VB using Positive Behavioral Supports and Discrete Trial Training for 25 - 35 hours a week (for 8 years), incorporating ALL therapies in the natural environment and in a mainstream classroom - extraordinarily beneficial, she was on the GF/CF organic diet and supplements

We have spent years trying to figure out the best combination of supplements for her; to–date this is what is working:

Variety of Probiotics Digestive enzymes B Complex
Magnesium Glycinate
Magnesium Malate
Vitamin A
Vitamin E
Sphingolin
K2
Carnosine
Ubiquinol
Folinic Acid
EPA/DHA
Milk thistle
Zinc
Grapeseed Extract
L-Theanine
Multi Vitamin
MSM
Phosphatidyl Choline
Biotin
Acetyl L-Carnitine
Chromium
Vitamin C
CoQ10
Riboflavin 5 Phosphate
MT Promoter
Phosphatidyl-Serine
Alpha Lipoic Acid
Alpha Ketoglutaric Acid
Glutathione
ATP with Ribose Vitamin D

Early-on, we cycled through viracin, itrakonazole, and ketoconazole; and we limited her sugar to the naturally occurring sugars in fruits/vegetables/carbs for a long time. We also fed her cultured foods, and supportive nutrition.

She is almost 14, today. She is fully verbal and age-level for academic subjects. She is behind about 2 years, socially and about 4 years in self-care. Overall, she is an amazing young lady who I am very proud to parent – she is a very hard worker!!! My daughter has sacrificed her childhood to therapies (over 18,000 hours, to-date), but is facing her teens and adulthood in a position which just might allow her to go to college and live a full and productive independent adult life.

While I recognize that not every case of “Autism” results from vaccine injury, I believe that the exponential rise in “Autism” cannot be explained, nor staunched, without addressing the 32-plus needles in the lives of newborns and infants. PLEASE, study the life/death, and health outcomes of entirely unvaccinated children versus fully vaccinated children, born between 1996 and 2005. Until this research is complete, at least propose to the CDC that our childhood vaccines should not commence until children are over 6 months of age (infants younger than 4 – 6 months of age are incapable of producing antibodies, anyway!), and we have assured each child is free from autoimmune, metabolic, and mitochondrial disorders (those who can be stabilized, should be stabilized before vaccination). With these interventions, alone, the dramatic rise in Autism will likely falter and probably plummet; and families, like mine, will not suffer the financial, emotional, physical, and psychological devastation that accompanies life with autism…

If you need more information, I am always available at [redacted]. Please let me know if I can provide any more information?

Thank you for taking meaningful action to stop the meteoric rise in children being impacted by symptoms which result in the diagnosis of “Autism.”


© Copyright 2019 LizP. All rights reserved.

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