Libby Rupp is a Warrior Mother
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.
Over 15 years ago, my great neuro found out that my son and daughter had an "unknown" mito disorder, whcih back then was life changing for him, for he said the words then, "this is the reason for their autism". He even said, he needs to go over every autistic patients chart and test them for this. When I called him the other day to confirm what we are finding in our community, he said, "I hate to say it, but I was the only one seeing this back then". My son/daughter did his/her biopsies at Children's Seattle and was sent to a biochem lab up in BC Vancouver. These are not commercial labs, and yes, they are CLIA certified. They both build up too much pyruvate and lactic acid, and wonders of wonders, when the autism mercury position paper came out, these were the two metabolic positions that mercury can change. Both of my children suffered from DPT/MMR and all shots combined, and had severe mercury toxicity, low glutathione, low sulfation, MTHF and COMT SNPS. They were sitting ducks. Because of this, my grown daughters who are NT, did not vaccinate their children, never had mercury in their mouths, and those kids are perfectly normal. IF mito is an X linked disorder, you tell me what is happening here? The facts remain, I had 11 amalgam fillings in my teeth, was severely mercury poisoned, (even more than my kids), and my babies got the full brunt of mankinds poisons. I talked to one researcher, and found out babies actually help mothers chelate their heavy metals, directly going into the placenta, cord and eventually brain of that baby to be. Poor little babies! Someone has to say it, this is so wrong. This is our moderen day holocaust. And the denial artists are doctors like this, medical socieities and pharma, and lastly our own prescious government.
Posted by: Kathy Blanco | October 09, 2008 at 03:34 PM
Wow! Libby as alway's hat's off to you! I love mother's like you! It alway's make's me excited to see that there are so many awesome warrior mother's out there! My child too regressed into the world of Autism within hour's of his vaccination's. My second child received eight vaccination's in one day and I noticed she became sensentized to her formula at 2 month's old and she screamed not to ever vaccinate her again I stopped all formula supplementation and vowed to solely breast-fed my child til the majority of brain development was completed at two year's old. People have alway's commented she'sso advanced with her language...I thank god that I wasn't stupid enough to listen to people like Dr. Schoffner, who still are going to support the regular vaccination theory! I am past floored by this! To think I was thinking about transferring over to him! NOT NOW!
I will tell you my son has had his most gain's with Chelation. Just to give you example: after 8 IV treatment's over the summer, returning back to school with the same teacher who had him previously wrote in her first note home. Brennan has 70% more eye contact, and I am hearing more language coming! Chelation and Hard Chamber Hyperbaric's and DIET have been what has helped our son the most! Keep fighting for your beautiful daughter, your doing an amazing job! I am so proud of all of these Warrior Mom's and Dad's God Bless you all!
Posted by: Dana Sturdivant | September 26, 2008 at 03:18 AM
Go Isabella Go! Godspeed!
Posted by: Holly M. | September 25, 2008 at 05:54 PM
I'm proud to know Libby Rupp. I've seen her precious daughter Isabella wander about our state capitol like a beautiful china doll. I've seen the stacks of studies that Libby has perused for many years now, and read her observations based on extensive medical reading, communications and travels.
So John Shoffner stated that "gains just happen with age and do not coincide with any specific treatments." What simplistic, oppositional hogwash! Using that logic, then explosive diarrhea is merely coincidental to the ingestion of a quadruple dose of laxative.
Shoffner is also the man who claims that Dr. John Poling is "muddying the waters" by sharing his daughter's medical information. Perhaps if he lived with autism, he would open his mind.
The historian Lewis Mumford stated that "the chief enemy of peace is the spirit of unreason itself; an inability to conceive alternatives, an unwillingness to reconsider old prejudices, to part with ideological obsessions, to entertain new ideas or to improve new plans."
As long as vaccine injury is allowed to flourish by public health administrators, peace will elude us all.
Posted by: nhokkanen | September 25, 2008 at 12:15 PM
Libby, thank you for this amazing article. Go Warrior Mothers!!!
In a court of law, eye witness accounts are crucial evidence, so why are parents' first hand accounts of their children's reactions to vaccines and their children's recovery stories so quickly dismissed and cruelly scoffed at? I think many doctors are grossly blinded by their pride. They've been saying for so long that vaccines are safe, and they can't stand the thought that they're wrong and that "non-scientist moms" are right.
Very interesting finding:
"I was merely pointing out that a sizeable number of scientists unrelated to the vaccine/autism debate have linked heavy metals to mitochondrial dysfunction. "
If heavy metals do cause mitochondrial dysfunction, this study could help determine which children would be more susceptible. It found that elevated parathyroid levels increase aluminum absorption. It also offers a great explanation of how aluminum, parathyroid hormone, and osteomalacia ("the general term for the softening of the bones due to defective bone mineralization")are all related to eachother. The CDC has already acknowledged one study that found an association between autism and thin bones, and I've seen other studies that theorize that family history of thyroid diseases increase a child's risk of autism. Here's the link: http://www.ncbi.nlm.nih.gov/pubmed/6422572
Wikipedia says that "A small percentage of people are allergic to [aluminum] — they experience contact dermatitis: an itchy rash from using styptic or antiperspirant products, digestive disorders and inability to absorb nutrients from eating food cooked in aluminium pans".
I think it's also worth mentioning that two vaccines commonly reported as causing severe reactions, Hep B and DTaP, both contain aluminum. Infact, back in 1983 when several severe reactions were reported after the DTP shot, DTP was the only aluminum-containing vaccine on the childhood schedule. (I know the problem with the DTP is believed to be due to the whole pertussis cell in the vaccine being as dangerous as the actual disease, but I still wonder if the high amount of aluminum contributed in some way too... One brand of DTaP contains 625 mcg of aluminum.)
And one more thing, why do some people in the "scientific community" mock us for getting our research online? There are many legitimate studies and lots of other valuable resources online. It's not like they were born knowing everything they know now. They learned most of what they know from reading too. And us moms are only trying to solve this puzzle ourselves because the scientific community with all their "experience" hasn't been able to figure it out yet. The arrogance and cruelty of some (but definitely not all) doctors and scientists just makes me want to vomit. I'm sorry he treated you that way Libby.
Posted by: CM | September 25, 2008 at 10:51 AM
As discouraging and closed minded as Dr. Schoffner's comments are, he did say, "that despite increased risk of complications, he supports a regular vaccine schedule." At least he is acknowledging there is an increased risk.
My response to him is, in light of the increased risk why wouldn't we do everything possible to minimize that risk. Given the known increase in risk it is ridiculous to say, oh well just proceed as usual. And this is where informed consent comes in. Shouldn't the parent be informed of the increased risk and be given the option as to how to proceed. One step further, we need to figure out how to screen for the underlying mitochondrial dysfunction, so that a parent knows what they are dealing with.
Again, there was no scourge of childhood disease back in 1983 when we only had 10 vaccines in the schedule. I can not understand, for the life of, me why this vaccine program must be administered as "one size fits all." Like Dr. Healy said, “we can probably vaccinate these children and protect them at the same time.”
And I am so sick of hearing doctors and scientist say, in so many different ways, that they don't believe our stories. That does a disservice to science. If mito dysfunction, metals poisoning and developmental regression go hand-in-hand then how can the doctor just dismiss the idea that treating the former two could improve the latter? He has no scientific bases for such a comment. You would think they would catalogue our reports, watch our videos and then decide if studies are warranted based on the observations? Isn't this how science is supposed to work? Instead we get; fingers in the ears, la la la, “I don’t hear you.”
Posted by: Pamela | September 25, 2008 at 10:34 AM
"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."
It should be abundantly clear to all of us by now that mainstream medicine and mainstream doctors are not interested in treating our children because they lack the opportunity to make money off of our kids (I mean other than the fact that its a lot of work to figure out each individual child and tailor a unique protocol for him/ her).
You can rest assured that if chelation were a mainstream approved treatment modality, all of the doctors would be all over it. However since it is not, and since Big Pharma can't make any money on it, they choose to bag it. Just like that study they shut down recently. Heaven forbid, people could actually do better healthwise - then what?
Posted by: Follow the money | September 25, 2008 at 10:31 AM
Thank you for sharing your daughter’s story and experience interacting with Dr. Schoffner. Dr. Schoffner’s attitude exemplifies the serious case of group think that is going on within the healthcare communities on the topic of vaccines and the link between autism. I find it baffling how as parents we are told by the medical community to monitor our child’s milestones and recognize “red flags,” but when we point out an obvious causal relationship our voices are dismissed and suggestions belittled -- makes one wonder if this directive is just lip service. Hopefully, the medical and health professionals who are so immersed in denial will not discourage parents like you from continuing to share your stories. Thank you for your strength in speaking out.
Posted by: Megan | September 25, 2008 at 10:24 AM
I'm always shocked that people like Schoffner even exist. I wonder if they're aware that they resemble some hypocritical villain out of Dickens. The author did an amazing job standing up to this profiteer.
We were so scared to start chelation but once we did, we quickly discovered how artificial the controversy over this is. Our twins have had medical oversight and are being carefully supplemented while undergoing chelation and we see nothing but gains. Our son, the more seriously injured, showed really spectacular leaps almost immediately on a very low dose. Everything human about him bloomed-- language, eye contact, affection, attention. For both kids, learning, sleep patterns and cooperative behavior improved greatly.
In short, "alternative" therapies, careful diet and chelation leave nothing for mainstream doctors to drug in our children.
So even aside from the grave "danger" that chelation poses in exposing cause (if the treatments aimed at vaccine damage work, surmising cause is made simpler), another "danger" must be that chelation and other "alt" treatments threaten profits from more "orthodox" treatments, not to mention the whole "gene theory" profit machine.
Posted by: Gatogorra | September 25, 2008 at 10:19 AM
Cathy-
Mito is quickly becoming a political football. 40% of children with Autism are known to have mito dysfunction.
Thimerosal in University studies is proven to DELETE mitochondria.
Any DAN(Defeat Autism Now)doctor can run initial testing of lactate, peruvate and carnitine.
It is also easily supported with ALA, Carnitine,CoQ10,Niacin,Riboflavin and Thiamine in published studies relating to auto-immune. HBOT also feeds Oxygen right down to the mitochondria in published studies.
Don't waste your time with doctors who care more about staying politically correct, then your child's health.
The greatest tragedy of all, is that in the rabid race to develop vaccines,there are ignorant doctors who deny helpful treatment when vaccines fail.
Don't waste precious time, get your child some help with the growing number of physicians in the know.
Posted by: karenatlanta | September 25, 2008 at 09:03 AM
Chelation is only dangerous because it is a smoking gun.
I have 4 kids one with Autism and symptoms indicative of mitochondria disorder.
My son with Autism was loaded with Mercury from his DTaP, HIB and Hep B.
He and my other kids(Also loaded with Hg and confirmed with CLIA certified labs) have been chelating for YEARS.
Everyone is better thanks to physician monitored chelation.
My son with Autism strung together his first sentence after his first dose of oral DMSA.
Later when we started IVs he jumped 2 years in language gains, documented in speech evaluations.
My daughter's learning disabilities vanished.
She went from below grade level to years above on her Iowa scores with 150 hours of HBOT and a year of IV chelation.
Agree with Mark Blaxill, it's the politics of science holding these children back.
Fine, I hope these same doctors are willing to figure out how to house and feed these the untreated children when we are gone.
Note to parents:
If your "alternative" lab holds a CLIA certification it means the FDA came out an inspected it. Labs like Great Plains Lab, Doctors Data and Metamatrix are all CLIA certified.
CLIA Inspections
The CLIA inspection regulations are found in Subpart Q of the Code of Federal Regulations; this subpart addresses both basic and specific inspection requirements. All laboratories issued a CLIA certificate and all CLIA-exempt laboratories must comply with the applicable inspection requirements. CMS's policy for inspections includes an announced initial and biennial recertification inspection and unannounced complaint and follow-up inspections. The process focuses more on outcomes as opposed to processes. CMS's objectives in developing an outcome-oriented survey process were to not only determine the laboratory's regulatory compliance but to assist laboratories in improving patient care by emphasizing those aspects that have a direct impact on the laboratory's overall test performance. CMS promotes the use of an educational survey process.
Basic Inspection Requirements
Laboratories are required to permit CMS or its representatives to conduct an inspection; CLIA-exempt and accredited laboratories must permit validation and complaint inspections. As part of the process, laboratories may be required to:
* Test samples, including proficiency testing, or perform procedures.
* Permit interviews of all personnel concerning the laboratory's compliance.
* Permit personnel to be observed performing all phases of the testing process.
* Permit CMS or its representative access to all areas encompassed under the certification, including (but not limited to):
o Specimen procurement and processing areas
o Storage facilities for specimen reagents, supplies, records and reports
o Testing and reporting areas
* Provide CMS or its representative with copies or exact duplicates of all records and data it requires.
* A laboratory must have all records and data accessible and retrievable within a reasonable amount of time during the inspection. Further, a laboratory must provide (upon request) all information and data necessary for CMS or its representative to make a determination of the laboratory's compliance. CMS or its representative may re-inspect a laboratory at anytime to evaluate the laboratory's ability to provide accurate and reliable test results. CMS or its representative may conduct an inspection when there are complaints alleging non-compliance with the regulations. Failure to permit an inspection of any type results in suspension or cancellation of the laboratory's participation in Medicare and Medicaid for payment and suspension or limitation of or action to revoke the laboratory's CLIA certificate.
The "Hogwash" award goes to Schoffner for baseless accusations.
Posted by: karenatlanta | September 25, 2008 at 08:35 AM
So if the UMDF is not ready to support what we Moms know (mito dysfunction + vaccines = some form of autism), where do you go for help? Get my email from Kim if you can so we can chat privately. This post worries me.
Thanks, Cathy Jameson
Posted by: Cathy Jameson | September 25, 2008 at 08:12 AM
Wow I was feeling a little low after the highs yesterday. This is a jaw dropper. We must fight to show documentation like this everywhere. Picture = 1000 words Video = 100,000 words Documentation of Recovery = Priceless! Thanks for lifting us up and being a warrior mom.
Posted by: Tanners Dad | September 25, 2008 at 06:49 AM
Libby,
I watched the video of Isabella. I have to tell you watching her as an infant was haunting to me as it was my son as an infant with that vacant look. What will it take to stop injuring our babies? I just heard a news report while watching this video that they are recommending the flu shot this season to all children 6 months and up and they are going to go where the children are ... the schools!
My God why won't anyone listen? I just finished Mom Warriors - thank you Jenny! Reading about the kids with seizure disorders and poor Elias who died and knowing there are so many others who didn't survive ...
Febrile seizures, diarrhea, hallucinations my son had them all. He's finally on his way to health ... the biggest gain for him was chelation ... To the AAP, government and pharmaceutical companies: stop trying to cover your asses and get these kids detoxified. Just look at what you injected in them and know not all kids can excrete this crap on their own. My son went through 4 years of physical hell to get where he is ... who's in denial???? It's not me. My science is true.
Posted by: Kathy | September 25, 2008 at 06:45 AM