Managing Editor's Note: I wrote the headline. Libby wrote this post. And take 8 minutes to watch the decline, fall and RISE of Libby's beautiful daughter, Miss Isabella.
By Libby Rupp
The mitochondrial disorder specialist that diagnosed Hannah Poling (HERE) and co-authored the study “Developmental regression and mitochondrial dysfunction in a child with autism” based on her case, last week told a group of parents in Minnesota that despite increased risk of complications, he supports a regular vaccine schedule and that he would never recommend chelation therapy to any of his patients.
In an address Sept. 12 to the Minneapolis-St. Paul chapter of the United Mitochondrial Disorder Foundation, Dr. John Schoffner said chelation is dangerous and that there are no studies showing that chelation benefits children or adults. He was unfazed when told that there are no studies, period, and that it is unfair to state there are no studies on the “benefits” when there are no studies on either side of the debate.
When asked if vaccines should be given one at a time, Dr. Schoffner stated that the regular vaccine schedule should be followed as it is based on considerable research.
Cancel the trip to Atlanta!
As a parent of a child diagnosed with a mitochondrial disorder and autism and whose medical history appears to be similar to Hannah Poling’s, I was eager to hear Dr. Schoffner’s presentation last Friday.
He began by stating that he would be talking to us as “colleagues“ rather than delivering a watered-down discussion of a complex topic. He answered the parent questions patiently and thoroughly. Towards the end of the Q & A period I held up the 167 NIH Toxline clinical studies linking heavy metals and mitochondrial disorders and talked about my daughter’s tremendous gains through chelation therapy. I expressed concern that information about this treatment isn't reaching parents of children with mitochondrial disorders. I never used the words “autism,” “vaccines” or “thimerosal”.
I’m not so naïve as to think Dr. Schoffner embraces biomedical interventions, but I was not prepared for what came next. Dr. Schoffner became visibly agitated. He raised his voice; his body language was tense.
He told me (in front of a large crowd) that he did not believe my story.
I told him I brought a video of the progress my daughter has made. He was not interested. He said that gains just happen with age and do not coincide with any specific treatments. I found this comment most intriguing as mitochondrial disorders are typically progressive in nature and that these “spontaneous improvements” are not described on the UMDF website.
Are we talking as colleagues now?
He made a comment about parents coming in and 'waiving reports from alternative labs.' I told him mine were from the Mayo Clinic. I wasn’t given the opportunity to note that, because I make it a point to verify the results of so-called ‘alternative labs’ for just that reason, my reports also came from the Cleveland Clinic, various Children’s Hospitals and other well-known and respected laboratories.
Dr. Schoffner told the group that chelation is dangerous and that he would never recommend chelation for any of his patients. He said there are no studies showing
chelation benefits children or adults. I responded that there were no studies – period and that it is unfair to state there were no studies on the “benefits” when there are no studies on either side of the debate. The Doctor assured me that none of the 167 clinical studies I brought pertained to my daughter’s case. Interestingly, I never said they did. I was merely pointing out that a sizeable number of scientists unrelated to the vaccine/autism debate have linked heavy metals to mitochondrial dysfunction. I would like to think the United Mitochondrial Disorder Foundation and doctors who treat children with mitochondrial disorders would be interested in this information. I am obviously mistaken.
I was feeling quite defeated and humiliated, until a mom slipped me a note that read "I believe you." At the end of the session, five other parents gathered around me and asked me questions about doctors and treatments and asked for my contact information. They thanked me for speaking up.
So in the end, the word about heavy metals and mitochondrial dysfunction got out, at least to a few families, and I saved a lot of money not having to travel to Atlanta.
Dr. John Schoffner, MD is president and co-owner of (Medical Neurogenics) which offers patient genetic testing and receives grants to research genetic disorders, including those of the mitochondria. As mercury is known to cause DNA alteration, I would like to think that there is room for both heavy metal- and genetically-based theories to come together in mitochondrial research.
Libby Rupp is a Warrior Mother.