The condition currently designated as ASD is epidemic. Reports about the alarming numbers abound, but it doesn’t seem to stick. “Is there really an increase in actual cases?” is the most common question that I get asked about my medical practice, even by professionals. From my perspective, media reports and journal articles can’t stop “exposing” the recent increase in measles – 3 times as many cases as last year. The rise in such a preventable infectious disease is regrettable and dangerous. However, it isn’t necessarily occurring in non-vaccinated children, it represents a couple hundred cases – not tens of thousands of patients – and no child has died (or suffered reported permanent damage). That contradiction leaves some families with an autistic child feeling lost and neglected by the conventional medical community and so they seek ‘miracle’ cures.
Stem cells have been successfully transplanted into corneas since 2003. In 2005, the FDA approved, and in 2006, “Neurosurgeons and physicians at Doernbecher Children’s Hospital, Oregon Health & Science University… performed the first transplant of purified human fetal neural stem cells into the brain of a study participant…” who suffered from a rare, inherited brain condition. The material came from dead human fetuses, in the hope that the new tissue would replace a missing enzyme in affected patients. In that study, performed on 6 patients, a billion stem cells were directly transplanted into the patients’ brains and steroids were administered for a year. Although the safety of the project was demonstrated, the ability of the new tissue to reverse that condition has not been documented. Research was discontinued and the company that makes the product hopes to perform the procedure on less-sick patients in the future.
Compare that carefully controlled study to the procedures that are offered at the various Stem Cell Transplant Centers that reside outside the US. Such protocols use cells of various origin (fat, blood) and various injection sites (lumbar puncture, veins) with various additional medications (antibiotics, steroids) on various patients (ages, sex, level of ASD).
Stem cell therapy is experimental and only in its earliest stages of proficiency. Specifically for ASD, which is an enigmatic, multifactorial, multi-system condition with a widely variable presentation and outcome, there is no research to document improvement and only anecdotal evidence that it is either helpful or safe. A conclusion – a scientific one – CANNOT be reached with this level of information. So, the family that chooses this endeavor is working on faith, the (limited) experience of others, and luck when it comes to “the best course of action.”
In addition to betting on “whether” the treatment might “work” (as always, don’t expect miracle cures, just expect miracles), the concerned parent must consider:
1. The cost of Stem Cells and implantation (>$20,000), as influenced by:
a. Which cells lines will be harvested and grown?
b. How the cells are delivered to the patient (artery, vein, spinal fluid)?
c. Other medications, laboratory testing, procedures, or anesthesia if necessary?
d. Complications, and there are never no complications.
d. Insurance – not covered!
e. Travel, including hotel stays.
2. Alternatives
a. Conventional - this should be the first therapy once an autism diagnosis is established or suspected. It includes a neurologic evaluation, a thorough medical evaluation, appropriate laboratory testing and follow-up. This should be followed by Occupational, Speech and Language, Physical and Behavioral Therapy as it applies to your child’s level of function.
b. Biomedical – this will assist many patients, especially the younger ones, toward recovery or significant improvement, especially when accompanied by conventional therapies.
c. HBOT – this therapy may be chosen by many parents as an earlier adjunct to the other biomedical techniques or when they see their child continuing to fail to meet social, academic and developmental milestones and demonstrate significant behavioral concerns.
d. Other – including RDI, Listening therapies, NAET, Sensory therapies, Neurofeedback, Hippotherapy, etc.
3) Opportunity costs. $20,000 = 3 months of 25 hours/week proven or combination therapies; 4 weeks of summer camp for 6 years; more than 1 year of assistance services (cleaning, caring, tutoring) in your home; 1 used, low pressure HBOT chamber on eBay; 75 high pressure, high oxygen HBOT ‘dives’ in a safe, reliable, clean Center; 4 MNRI™ conferences, many years of neurofeedback, lots of NAET, or ten years of care at The Child Development Center of America (that’s me), including labs, supplements and medications. That dollar figure also equals the low estimation of 1 year of extra costs for each child with Spectrum Disorder.
4) Risks, which will be covered at the conclusion of this series.
In the US, a cord blood bone marrow transplant to treat sickle cell disease costs approximately $250,000 to $500,000. Since stem cell transplantation for ASD is not being studied at any US institution, parents seek care in Mexico and other Central America countries, Europe, China, South Korea and the Ukraine (more to follow, I’m sure). Depending on the Center, costs vary, starting at over $15,000 (various sites, parent’s information) for treatment alone (not including travel). Patients are required to remain for between 1-2 weeks for follow-up.
That concludes some basic background information that ought to be considered in order to make an informed decision about this complicated topic. The next post will sum up all of this and offer some advice.
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