What follows is part of a consent order from a state’s board of physicians to a physician under their jurisdiction. I’m not a physician, so I will give this physician the “professional courtesy” of not criticizing his practice of medicine, much. Instead, I’m going to quote for you a part of the order in which one of the cases under this physician’s care is described. In my opinion as someone who has always worked hard to be professional in work, and as a regular human being, the case described in the order painfully exemplifies what happens when parents of an autistic child are out of options and are sold a bill of goods by practitioners of alternative medicine.
Before we go any further, please be advised that the description is painful to read, and I can imagine it would be especially more painful to read to parents who have lost a child or have struggled with a special needs child. If you are interested in obtaining the whole order, please leave a comment with your real email in it, and I’ll tell you how to get it. It is publicly available, but you have to search for it.
This is the description of “Patient 5” in the order. The “Respondent” is the physician against whom the order has been written. Words in brackets  are my clarifications of terms; parentheses () are part of the actual order.
“Patient 5, a male, had a history of ASD [Autism Spectrum Disorder] with severe self-injurious behaviors (“SIB”) including eye injuries (detached retinas). Patient 5’s parents brought him to the Respondent for alternative therapy; he had been on multiple psychotropic medications without success.
The Respondent conducted three in-person visits of Patient 5, beginning on October 27, 2011. Additional encounters included telephone and e-mail consultations. The last documented encounter was a telephone consultation on January 17, 2012.
The Respondent treated Patient 5 with various supplements, dietary changes, Zithromax, LDA [low-dose allergen therapy] treatments and Lamictal [a seizure medication].
The Respondent elicited a detailed history during his initial visit, but failed to conduct a physical examination of Patient 5.
On October 27, 2011, the Respondent prescribed Lamictal to Patient 5.
The Respondent initially treated Patient 5 with LDA on October 29, 2011 (“LDA #1”). He failed to conduct any allergy testing prior to injecting Patient 5 with the LDA treatment.
LDA is not an accepted treatment for ASD.
Since the FDA [Food and Drug Administration] does not regulate LDA it must be compounded individually. The composition must be specified for each patient use.
The Respondent failed to document a specific prescription for Patient 5 for the LDA.
On December 11, 2011, Patient 5’s father sent an email to the Respondent noting that Patient 5 had shown no improvement and had worsened in some areas. The Respondent recommended stopping the Lamictal.
On December 19, 2011, the Respondent documented that LDA #1 had helped for one week. Patient 5’s school was reporting difficulty with his management. The Respondent administered a second LDA treatment on this date. He also provided Patient 5 with a prescription for Zithromax with one refill.
On December 29, 2011, Patient 5’s father stated in an email to the Respondent that Patient 5 had experienced increased agitation, outbursts and SIB after giving Patient 5 a six pill package of Zithromax noted in paragraph 80 [above].
On January 4, 2012, the Respondent participated in a conference call with Patient 5’s school staff. There had been an increase in Patient 5’s aggression including throwing furniture, destroying property and SIB. Patient 5’s school recommended an in-patient stay based on safety and learning problems. The Respondent recommended that Patient 5 be provided a homebound instructor as he needed to be with his parents.
On January 17, 2012, the Respondent documented a telephone consultation with Patient 5’s father, stating in part that Patient 5 had been discharged from school, that he had discussed two new supplements (VSL3 [probiotics] and methylfolate [a B vitamin]) and that the family was considering a trip to Africa. The Respondent documented that the plan included VSL3, “if stable” methylfolate and zinc. The Respondent mailed a prescription for methylfolate with six refills issued to Patient 5. The Respondent had further documented that the plan included “LDA” and consideration of additional supplements on the next visit scheduled for February 14, 2012.
The Respondent failed to include signed informed consent forms in Patient 5’s record indicating that Patient 5’s parents were aware of the risks of the alternative therapies he was prescribing.
On February 29, 2012, Patient 5’s father sent the Respondent an email telling him that Patient 5 had died while in Africa.
The Respondent failed to meet appropriate standards of delivery of quality medical care of patient 5 in violation of [regulations].”
It was very hard for me to read this, re-read it for comprehension, and then transcribe it to this blog post. The board of physicians ordered the “Respondent” in question to pay a fine of $5,000 and to not administer any more chelation or anti-fungal medication as part of his alternative approach to treating symptoms of autism. His license was also placed on probation, but he is allowed to continue his pediatric practice. To me, this seems like a slap on the wrist, especially after reading the other cases in the order. If a healthcare provider keeps prescribing medication off-label and without evidence of it working, then that person needs to be in some other profession. Again, this is my opinion.
However, I’m not a healthcare provider, and I do not know all the specifics of all the cases.
Still, what happened to “Patient 5” in Africa that he ended up dying? Was he taken there by his parents for alternative treatment, a vacation, visit relatives?
And how did the school react to the recommendation that Patient 5 not be treated at an in-patient facility? That is, did anyone else advocate for him besides his parents and the “Respondent”?
Again, if you want to read the whole order, leave a message and make sure to include your real email in it. I will not disclose that email to any third parties under the commenting policy of this blog.