The long-term goal of my approach is formalization and standardization of this protocol. With the use of advanced immune, genomic, NeuroSPECT, and other markers, it would become possible to accelerate a further understanding of the successes and failures of this method and thereby help expedite development of new agents and new pharmaceutical aids much faster than otherwise would occur. Opening the door to understanding what could be done, the right role for true immune modulators, could change therapy for children with these disorders, and many related disorders in adults, in a dramatically positive manner. Used correctly, chosen correctly, we can open the door to how to actually make our immune systems healthy and in turn potentially change long-term disease outcomes for many.
Patient Workup and Evaluation
Before patients are accepted into the practice, I review their records and see if they fit under the description of NIDS. Since most of the patients I see are children, they come to my office originally diagnosed with a different problem, usually autism/PDD, ADHD, or chronic fatigue syndrome. Most children I see give evidence of immune factors or viral factors. We’re looking at an illness creating a dysfunction in what was previously a regular child, rather than this vague concept of something happening in utero. When you look at the data from these children, their viral markers, and the progression of their development, it becomes very obvious that one can only explain this by reference to a disease state.
To review: Somewhere between twelve, fifteen, or eighteen months (sometimes even later), these children slowly digress into this disorder labeled autism. But if you look at how the brain works, if you understand biology, you cannot have a normal child for twelve, fifteen, or eighteen months of life, a child who shows skills in developing and then loses those skills or stops progressing, and somehow try to think that something went wrong before that child was born. This is only explainable by a disease process.
Next I look for past histories supportive of immune factors in the family history, such as allergies, asthma, migraines, rheumatoid, or potential autoimmune-mediated disorders (including MS, lupus, Alzheimer’s, Parkinson’s, CFS, or fibromyalgia; often a major factor in parents, particularly the mother, of these children), IBS, ulcerative colitis, or Crohn’s disease—in short, anything atypical.
I have to decide if the patients’ charts show a pattern consistent with NIDS research. For instance, most of the children that I am seeing may be viewed as a subtype. A lot of the children I have seen have regressed and have lost skills. That means that they had words but then lost them and then did not progress. I have also seen improvements in hypotonia (low muscle tone, often previously thought untreatable) in a definite subgroup of these children. The following checklists, notes, and procedures are typical of what a parent can expect when they consult my practice for help with a child showing symptoms of autism (or any NIDS disorder).
I look at several types of medical issues that may be related to autism/ NIDS, including immunologic problems.
Past history:
➢ Increased incidence (in mothers) of Miscarriages
Infertility
Preeclampsia
➢ Bleeding during pregnancy
➢ Prenatal, perinatal stress of the child
A past medical history (of conditions associated with autism in the past) needs to be ruled out
➢ Tuberous sclerosis (genetic)
➢ PKU (metabolic)
➢ Congenital rubella (viral)
➢ Down syndrome (genetic—chromosome 21)
➢ Fragile X (genetic)
Keys on intake:
➢ History of being normal until between twelve, fifteen, and eighteen months of age and then proceeding to cognitive issues and their dysfunction (often label of autism/PDD)
➢ Child with motor (fine, gross, or coordination) issues. This has become a clinical flag for a high probability of a viral component Stress at intake. In the literature forty or fifty years ago, there was no discussion of motor abnormalities with “autism/PDD” (psychological, DSMIV category disorder); now these children routinely have motor issues
➢ History of seizures or atypical EEGs. These were not typical in the literature years ago. They were so rare that something called “Landau-Kleffner” was not even known by an excellent pediatric neurologist in the mid-1990s. Now we are routinely saying that 35–40 percent of these children will develop a seizure disorder. This has become an extremely strong point clinically for either a virus or a more severe autoimmune immune/vasculitis process.
Information required before the first office appointment:
Children:
➢ Complete medical history from parents, typed
➢ Medical records including neurological and psychological evaluations
➢ All prior treatments
➢ Past labs
➢ MRIs or other procedures
Adults:
➢ Medical history from onset of symptoms and before
➢ Medical records including current medications and dosages
➢ All prior treatments
➢ Past labs
➢ MRIs or other procedures
First Visit (questionnaire):
➢ Patient presentation, complaints, current diagnoses
➢ History and important items to note: Birth history/trauma
Age of: sat alone ____, walked ______
Asthma
Eczema or hives
Allergies to medications
Convulsions
Tonsillitis
Constipation
Diarrhea
Any episode of unconsciousness
Temper tantrums
Family conflicts or problems
Diabetes
Rheumatoid arthritis in family
Thyroid issues in family
Ulcerative colitis in family
Migraine headaches in family
Asthma, eczema, or hives in family
Recurrent ear infections
➢ Current medications/treatments
➢ Current supplements
➢ Symptoms—most important items: Nonrestorative sleep
Trouble falling asleep
Waking during night
Rash of herpes simplex or shingles
Fatigue
Memory disturbance
Frequently saying the wrong word
Depression
Anxiety
Panic attacks
Headaches
Seizures
Ringing in ears
Intolerance to bright lights
Recurrent flulike illnesses
Painful lymph nodes
➢ Severe nasal and other allergies
➢ Muscle and joint aches with trigger points or fibromyalgia
➢ Irritable bowel syndrome
➢ Low-grade fevers
➢ Night sweats
➢ Severe PMS
➢ TMJ syndrome
➢ Mitral valve prolapse
➢ Frequent canker sores
➢ Thyroid inflammation
➢ Dyspnea on exertion
➢ Multiple sensitivities to medicine, food, and other substances
➢ Problems during pregnancy
➢ Maternal fever
➢ Maternal bleeding
➢ Perinatal bleeding
➢ Perinatal or neonatal asphyxia
➢ Neonatal infection
➢ Maternal miscarriages
➢ Autoimmune disease
➢ Rheumatoid disease
➢ Lupus
➢ Normal developmental milestones, then changes
➢ Frequent ear infections
➢ Asthma
➢ Hay fever
➢ Eczema
➢ Migraines
➢ Constipation
➢ Diarrhea
➢ Hospitalizations
➢ Obsessive compulsive tendencies
➢ Lethargy
➢ Staring spells
➢ “Tuned out”
&
nbsp; ➢ Muscle tone
➢ Coordination
➢ Motor skills, fine and gross
➢ Focus/attention
➢ Spaciness
➢ Speech/verbalization
➢ Hyper
➢ Socialization
➢ Appetite
➢ Eye contact
➢ What type of educational setting? Special education, regular classroom, shadow in class, etc. Review paperwork
Review commitment to care and weekly update procedure
Explain SPECT scan, referral
Explain and order blood work
Discuss diet/elimination
Perform basic health exam—HR, BP, Ht, Wt, BS, HEENT, chest,
heart, abdomen, extremities, and basic neuro.
Baseline neuropsych test? (when in formal protocols)
Questions asked at each office visit, by the admitting nurse:
Children:
➢ What medications and doses are currently being used?
➢ What does the patient’s diet consist of?
➢ Is child spacey or zoney?
➢ How is the child’s sleep cycle?
➢ Is the child waking rested, or tired?
➢ Has the child been hyper or aggressive?
➢ How is the child doing academically?
➢ How are the child’s social interactions?
➢ Does the child initiate play?
➢ Is the child interested in play?
➢ How is the child’s appetite?
➢ Does the child crave or want any one particular food?
➢ Does the child have any allergy or cold symptoms?
➢ What has changed positive/negative since the last visit Particularly related to medication changes that may have occurred
➢ Any pickup in language or skills?
➢ What supplements (if any) is the child currently taking?
Adults:
➢ What medications and doses are currently being used?
➢ What supplements are you currently taking?
➢ What does the patient’s diet consist of?
➢ How is your sleep cycle?
➢ Are you waking rested?
➢ Do you have any brain fog or memory problems?
➢ Do you have any muscle or joint pain?
➢ How is your cognition?
➢ How is your appetite?
➢ Any sensitivitity to light?
Appointment procedure completed by the physician:
➢ Medical evaluation: breath sounds, heart rate, visual inspection of EENT
➢ Consult about patient/caregiver responsibility for treatment
➢ Order for SPECT scan? (depending upon clinical protocol)
➢ Order for blood work if determined necessary; may include any or all of the following: CBC (with full manual differential)
Sedimentation rate
CMV IgG/IgM
ANA titer
EBV IgG/IgM
Hypothyroid panel
Ferritin level
Immune panel—
Total & % CD4
Total & % CD8
Total & % CD16/CD56
Total & % CD19
Lead level (if never done)
Vitamin B 12 level
Folic acid
Vitamin A level (if history of supplements)
Vitamin D level (if never done, or on supplements)
Comprehensive metabolic panel
Lipid panel
HHV6 titer IgG/IgM
Quantitative immunoglobulins (IgG, IgA, IgM, IgE)
Gliadin antibodies IgG/IgA
ASO titer
Alpha interferon (very optional expensewise)
HSV I/II—IgG/IgM
Allergy food screen (IgG4 based ninety-five foods)
➢ I may or may not need to prescribe antibiotics to handle issues of bronchitis, ear infections, or strep throat.
➢ Any time a medication is prescribed or a dosage changed, the patient is informed of what response is intended and what reactions, both good and bad, to be aware of, and when to call the office if there are negative reactions.
Note: My office has the capability to do rapid strep tests, tympanograms, and other quick diagnostics. I belong to a nationally certified lab that does routine blood work as well as immune testing.
(Note: Regular follow-ups, updates, and controlling changes are critical to understanding a patient—child or adult—and coming to the best answers and choices for that individual)
Weekly Updates:
Patients are required to submit weekly information updates via fax or e-mail and include:
➢ Date
➢ Patient Name
➢ Patient Date of Birth
➢ Patient Weight
➢ Current Medications and Dosages
➢ Date of Recent Dosage Change
➢ Positives (especially in relationship to any recent medication change)
➢ Negatives (especially in relationship to any recent medication change)
➢ Comments
Second Visit:
Review SPECT (if done) and blood work findings
Review confirm diet changes
Basic health exam
Prescribe meds if indicated
or
Monthly Telephone Consultations:
(For those not within driving distance)
Patients have a monthly twenty- to forty-minute telephone consultation with me. I access the patients’ computer charts, review the previous patient treatment and recent weekly updates, and query the patients (or the patients’ parents) as to their present health and brain function. I add new patient health information and medication and dosage changes directly to the patients’ computer charts. My telephone consultation questions and treatment changes/additions are based on the conversation with the patients and the patients’ previous treatment and blood work results documented on the computer chart. It is the same as if you were standing in front of me, except for the acute physical exam. (I request parents see their local physician if there are any issues of acute or unexplained illness suspected.)
Subsequent Visits:
- Confirm compliance with medication, diet, and weekly updates
- Detailed update (supplementing weekly updates) regarding any changes related to medication changes (good or bad) along with, at the time of the visit, details regarding overall progress, brightness, dullness, the child’s sense of being connected and receptive to learning, and difficulties arising from behavior or learning techniques and backgrounds.
- Review most recent blood work, order additional if needed
- Basic health exam
- Adjust medications per protocol and patient’s condition
- Check need for consultations with other care providers on progress
- Six months and/or one year: Order NeuroSPECT (if indicated)
- Neuropsych testing or “wellness” quotient updated (with any formal study)
- Any changes at all either positive or negative (there should be no ongoing negatives!)
- One should monitor complete blood count (CBC) with differential, and a chemistry panel (focusing on liver functions and kidney functions) on any child using a pharmaceutical medication of any kind at least bimonthly (initially on protocol—first year may be monthly) Having many children (and adults) on antivirals from three to four months, often one to two years, many now much longer. I will always show routine monitoring (which should help to support safety over this long-term)
Only significant toxicity issue appears to be kidney function (only transient in one or two children over all these years)
- Would advise monitoring growth and development (done on some of the patients; if a retrospective or prospective study is pursued, it would likely be available around the country by their physicians). Confirmed by general good height, often better growth (recovering from illness), but may have weight issue (variable)
Patient Blood work
Backgroun
d
As a physician with a strong background in what we call basic sciences (college and medical school) and then a strong clinical and research exposure heavy on immunology, infectious disease, allergies, and endocrinology, I watched these patterns of illness and diseases change before my eyes (less than a decade in practice). It was rapidly obvious that the only likely common denominator was the immune system. We study all kinds of environmental stresses and exposures, immune markers, and variations of multiple immune-related diseases without ever stepping back and realizing the real key is the immune system itself.
The disorders discussed in this book (and other related ones) can begin to be corrected—the key is having a healthy functioning immune system. Any effort to push the system one way or the other is going to create a problem, cause extra stress on the system, and could lead to further harm.
IMMUNE SYSTEM—ACTIVATED/SUPPRESSED VERSUS DYSFUNCTIONAL
Some of these children over the years have had positive ANA (antinuclear antibody) titers—a classical marker for the potential of lupus or other autoimmune disease. This is ignored in children diagnosed with autism. The argument is that we are merely detecting positive ANAs more often with better techniques and that it does not signify any other problems within these children. The problem with that reasoning is that if in training I was taught a positive ANA was not good—was the harbinger for potentially bad things—then just because we have better lab techniques, what makes it okay to dismiss now “at low levels,” much less when there are significantly elevated ones. A positive ANA means the body is making antibodies against the nucleus of its own cells. At any level, any degree, how can this be okay, how can this not be potentially pathologic in these children, any positive child or adult?
The Myth of Autism Page 8
