Immune Treatments For Autism
“SINCE 1938, there have come to our attention a number of children whose condition differs so markedly and uniquely from anything reported so far that each case merits—and, I hope will eventually receive—a detailed consideration of its fascinating peculiarities...."
That famous sentence from Dr. Leo Kanner has been ignored for far too long. We, here at Age of Autism, believe that it is the first clue in solving the epidemic cases of autism today.
Kanner's terminology -- "fascinating peculiarities" -- has been the main focus of autism for seven decades. Because he was a psychiatrist, autism was categorized as a mental disorder. Since then, autism has become the focus of study after study, most about as far away from its true origin as possible. I dare say that we are now – finally -- seeing the paradigm turning a bit faster.
It was just last year that I reported French doctors using antibiotics to treat autism, with some being cured of their symptoms:
“…successive antibiotic treatments with accompanying medications induced in 60% of cases a significant improvement -- sometimes even a complete resolution of symptoms. These children can now lead a normal school and family life."
Autism is creeping out of Psychiatry and instead, on its way to its correct destination – a NeuroImmune disease. Its “fascinating peculiarities,” are actually turning out to be a domino effect of a dysfunctional immune system. The triad of symptoms that have historically described autism are actually the end result of an abnormal immune system, not an abnormal child:
- difficulty with social interactions.
- difficulty with language and other forms of communication, like gesturing or using facial expressions.
- unusual, restricted or repetitive behaviors (also called “stereotyped” behaviors or stereotypies), which can involve either interests or actions.
For the many thousands of parents, like myself, who have witnessed their child regress into autism, this is helpful and hopeful. Many saw dramatic changes after vaccinations: rashes, gastrointestinal distress, vomiting, chronic sore throats, ear infections, and fevers. Subtle or acute behaviors then emerged and those behaviors unfortunately became the focus. That is beginning to change.
Autism Speaks seems to now be funding a study on immunotherapies and autism. This is a direct focus on the idea of immune dysfunction and autism - Anti-Neuronal Autoantibodies in PANDAS and Autism Spectrum Disorders
“Pediatric neuropsychiatric and movement disorders affect millions of children each year with devastating consequences on families. Work done over the past 12+ years has focused on understanding how infections and autoantibody responses affect the brain. The investigators have found that neuropsychiatric and movement disorders such as pediatric autoimmune neuropsychiatric disorder associated with streptococci (PANDAS) are associated with a group of autoantibodies which may be elevated during disease symptoms and may signal neuronal cells in the brain. This project explores the hypothesis that autism spectrum disorders (ASD) are associated in some instances with PANDAS symptoms where the two diseases may be co-morbid…….This research has the potential to identify patients with autism who would benefit from immunotherapies or other PANDAS treatments.”
I have been writing about both autism and PANDAS as my own daughter, diagnosed with autism in 1995, is affected with chronic infections and now an autoimmune diagnosis. I keep meeting more and more families who have children with autism, PANDAS or both.
Interesting yet oddly enough, Thomas Insel, the head of NIMH and also of the IACC, The Interagency Autism Coordinating Committee , has only touched once in 7 years on infection, immune issues and autism:
2010 – “Do infectious agents influence the development of autism, anxiety, or mood disorders? This remains a frontier area for NIMH research. The increasing evidence linking strep infection to OCD in children suggests that microbiomics may prove an important research area for understanding and treating mental disorders.”
It is no longer a frontier area to see autism as a disorder with roots to infection and immune dysfunction:
Adaptive and Innate Immune Responses in Autism: Rationale for Therapeutic Use of Intravenous Immunoglobulin
“Because patients with autism display IgG or IgG subclass deficiency, the presence of autoantibodies, and an increased production of proinflammatory cytokines and chemokines, and IVIG is used as a replacement therapy and plays an important immunomodulatory role in autoantibody production and proinflammatory chemokine and cytokine secretion, a good rationale exists for the use of IVIG in at least a subset of patients with autism.”
What is IVIG? According to Wiki:
“Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled, polyvalent, IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months.”
This paper describes the many uses of IVIG :
“The clinical use of intravenous immunoglobulin (IVIg) has expanded beyond its traditional place in the treatment of patients with primary immunodeficiencies. Due to its multiple anti-inflammatory and immunomodulatory properties, IVIg is used successfully in a wide range of autoimmune and inflammatory conditions.”
I decided to check with some families that I know who have used IVIG for their children, who have an autism diagnosis:
- “... Our son has Autism/PDD NOS, our girls do not and all 3 of our kids have different degrees of PANS/PANDAS. The two older ones had severe immune insufficiency…Our children were very well maintained by IVIG, it supported their immune system and allowed them to fight infection and function at school.
..our son with Autism -- having him on IVIG gave him language, brought him more in to the present. He became a student at school and not a just some autistic kid who couldn't sit, or attend.”
- “We have seen many improvements with IVIG. . He was able to concentrate and understand more than before. …. a letter from his teacher on what they observed after treatment -- We saw an increase in eye contact (actually seeking it), the ability to draw and label pictures, a want to show us things and label things, a huge decrease in tantrums, and ability to find and use words. He also became less affected by food violations.”
- “My son is 16 and has autism and PANDAS. We have been seeing our doctor for about a year and along with antibiotics we have done 8 IVIGs. It is the best thing we have ever done for our son!!!... When we got the PANDAS diagnosis and started IVIG my son was very aggressive. One day he had gone into a rage and aggression and bit my finger until he broke it- all while being held down by 3 people. Thankfully after the first IVIG the aggression was gone. His anxiety was gone too. My son is nonverbal but uses RPM to spell. He used to tell me he was worried about everything. After IVIG he told me he was happy and the anger and worry were gone…We've done 8 IVIGs now, about 6 weeks between each. He still has a lot of OCD but we've seen so many nice changes. He has stopped chewing paper, which was a totally disgusting constant behavior. He stopped ripping his clothes. His speech is getting better. He has severe apraxia but he can now say sounds he never could before and is putting phrases together. Night time peeing accidents have stopped. He is so much calmer and happier.”
Very good news from those already using IVIG for autism but --- when will insurance companies stop fighting and pay for these crucial treatments? IVIG is highly expensive and many are experiencing denial of services yet earlier studies do show its benefits:
“Monthly treatment with intravenous gamma globulin (IVIG) may improve hyperactivity, inappropriate speech, irritability, lethargy, and stereotypy in children with autism.
This open retrospective study included 27 children with autism, who had failed to show improvement with dietary elimination of dairy and gluten, vitamin and mineral supplementation, and behavioral educational therapies. Previous studies have suggested that children with autism may have immunological disorders. The group of children in this study had many signs of an overly strong immune response including a high level of antibodies to myelin basic protein, thyroid, and DNA. IVIG is an approved immunological therapy that is considered to be safe for individuals with autoimmune diseases. The authors found that IVIG therapy for six months resulted in improvement in all measured aberrant behaviors.”
PANDAS is being researched in a clinical trial for IVIG - Intravenous Immunoglobulin for PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections), http://clinicaltrials.gov/ct2/show/NCT01281969 , which is really great. Autism also needs to have treatments explored for the immune system. We have seen research and parental reports describing improvements seen with the use of IVIG, but also many antimicrobials, such as antibiotics, antifungals, antiparasitics and antivirals. Also probiotics and anti-inflammatories have been found through research and parental reports to help relieve symptoms in autism.
Here is something to consider, reported here by Dan Olmsted and indicative of the relationship of IVIG, the immune system and autism:
"Absent, too, is the fact that Child 11 is now in college in California after graduating from high school with a 3.75 academic average.
The treatment the father cited, and the rationale for it, has been described in detail by the U.S. doctor who administered it. “A number of immunological abnormalities have been observed in patients with autism,” according to the text of comments he subsequently made at a meeting of an autism group. He said all the children he treated, which included child 11, had regressed after the MMR shot.
“Natural killer cells … that appear to play an important role in defense against virus infected cells and tumor cells are decreased both in numbers and functions in patients with autism. This deficiency may play a role in increased susceptibility to various infections that may in turn play a role in the pathogenesis of autism.”
He goes on to describe the use of IVIG in this context, at the 400 mg/kg dose the father cited. “IVIG has been used in a number of primiary immunodeficiency syndromes, and autoimmune and immunoinflammatory disorders including demyelinating polyneuropathy, multiple sclerosis, Guillain-Barre syndrome."
In his autistic patients, "The results of IVIG treatment show that a noticeable improvement, although to a variable degree, was observed in reciprocal social interaction, verbal and non-verbal communication, and repertoire of activity and interest in all children. One of these patients has been 'completely cured' and is attending regular school."
Autism is not a mystery. It is for far too many, an immune system needing much medical help. It's time to make that a priority in research, in clinical trials and in every doctor's office around the world.
Teresa Conrick is Contributing Editor to Age of Autism.
Please post here what type of oral immunotherapy helped your children? It may help others.
Posted by: Paulina Bystritsky | December 22, 2014 at 05:34 AM
Before I learned about PANDAS my son was chronically ill, asthma, food aversions, behavioral and social impairments. Diagnosis was PDD-NOS, then autism, with GERD and gastric lesions. We took him to traditional pediatric GI specialists, autism specialists and an immunologist at UCLA, several pediatricians. I kept questioning his low immune function levels. Every doctor said there was nothing to worry about. But, my son was getting worse and worse. There is nothing scarier to a parent than to see your child's health failing and doctors say there is nothing they can do. Finally, I took him to a biomedical/MAPS doctor who recognized that my son was very sick. She said that his symptoms were consistent with PANDAS/PANS, blood tests confirmed the Strep A titers (missed by 2 other doctors). She prescribed a long round of antibiotics, and slowly added probiotics, enzymes, Vitamin D, fish oils, CoQ-10, l-carnitine, methyl B12, melatonin for sleep, GF/CF/SF diet, etc. But, what I think really helped was Xymogen IgG 2000 DF powder. (you can buy it online).
My son could not tolerate IVs, so this is where we started. The progress over the past year has been significant. His asthma is almost gone, and his illnesses are more typical in duration and severity, his stamina is increasing. His immune function is now within the normal range. His language improved, joint attention, sensory processing improved. We combined it with ABA, OT, and speech therapy, and I feel so much hope compared to the time not too long ago when no doctor seemed to be able to figure it out and he was getting sicker and sicker. I know that cost is a huge roadblock and these supplements (and the doctor visits) are not covered by insurance. But, my husband and I both said that we would rather lose our home than lose our child.
Posted by: Selena | September 15, 2013 at 01:45 PM
Carolyn,
Thanks for the link to the AOA article. The researchers wrote that milk of Indian women was more active against rotavirus than the milk of American women. Of course this would be the case, as the milk of any mother is designed specifically to target the pathogens in her immediate environment in order to protect her baby. So where rotavirus is more prevalent, human milk will be more protective. I am not sure though, if vaccine strains are easily killed by human milk because they have been purposely weakened so as not to cause disease, and that wild rotavirus would be more virulent and present more of a challenge to some babies even in the presence of unrestricted breastfeeding. I'm sure it has been known for decades though, that human milk is active against rotavirus.
It is sad to see scientists defining this protection as a "negative effect". Stopping breastfeeding for any length of time threatens the mother's milk supply, puts her at risk for mastitis and leaves her baby unprotected.
Outside of the lip service that "breast is best", the medical community does not promote or protect breastfeeding because they are paid off by Pharma to promote formula. It's been that way since the development and early marketing of infant formula as a product and since the specialty of pediatrics began in the early 1900s. Those two industries started and fed off each other (babies fed formula need more pediatrcian visits) and that continues to this day. It has always galled me that doctors continually beat the vaccine intake drum while ignoring or outright sabotaging breastfeeding, which is nature's most important provision of protection for the human infant and young child.
Posted by: Linda | September 13, 2013 at 10:57 PM
Mary,
I think Beth Maloney is awesome. I'm on her e-mail list and one of the last ones talked about a researcher she met who's working on a neuroprotective drug and also looking in to the inflammation and autism connection. She told him about Paul Patterson's autism research also.
There is no question in my mind that autism is neuro-inflammatory and that autism and auto-immune
disorders like PANDAS/PANS are connected. I'm just not sure
how to pay for the treatments, BUT if we can prove anti-brain
antibodies with cunningham panel it's possible insurance would
foot the bill. The only 5 things that they test for ( at this time ) are antibodies against dopamine receptor 1 & 2, lysoganglioside, tubulin, and CaM Kinase II. Maybe some autism is a different receptor they don't have a test for yet. I feel like there is a light at the end of the tunnel. Its a very tiny light, but it's there.
Posted by: Theresa 66 | September 13, 2013 at 05:58 PM
In 2009, Beth Maloney published her book entitled Saving Sammy. Her website today (savingsammy.net) says: “When my middle son was twelve, he was diagnosed with Obsessive Compulsive Disorder and then Tourette Syndrome. Confined to our home by the horror of his illness, a lifelong placement seemed his likely fate -- until I learned that a strep infection might be the cause (a disorder known as PANDAS). Most doctors said I was wrong; but I was right, and two doctors helped me cure him. He is now fully recovered.” I have read her book and it looks very authentic to me. She lives in Maine.
Posted by: Mary W Maxwell, PhD, LLB | September 12, 2013 at 08:17 PM
Linda -
Another possible reason that Offit et al don't publicly promote breastfeeding can be found here: www.ageofautism.com/2010/05/breast-not-best-study-suggests-rotavirus-vaccines-work-better-with-formula-.html
The study apparently concluded that breast milk may have been reducing the potency of the vaccine - and advocated delaying breastfeeding.
Posted by: Carolyn M | September 12, 2013 at 07:17 PM
Yes, Jenny, breastfeeding is nature's way of vaccinating young children. That secretory IgA lines the GI tract, preventing invasion. It persists for as long as breastfeeding continues, which is one reason (of many) why breastfeeding for years is best.
Isn't it interesting though, how Paul Offit et al haven't come out promoting breastfeeding? Why doesn't he want to mandate that? Why not push for legislation that would protect a woman's right to breastfeed and that would limit the pharmaceutical's industry marketing that targets and influences this crucial health protecting and promoting behavior? One reason is because breastfeeding is free and when women don't breastfeed, they have to buy formula, a Pharma product.
Posted by: Linda | September 12, 2013 at 05:41 PM
Re: oral immunotherapy -
Quite a while back I followed a line of thinking based on a something a researcher had written in a book that actually said that saliva could kill the polio germ. That led me to trying to learn what, in saliva, was capable of that, and I ended up reading a bit about selective IgA deficiency. I felt like the medical symptoms of selective IgA deficiency and autism were so so similar. If I recall correctly, IgA is only present in saliva, tears, and breast milk. I felt there were strong implications there as to why raw milk was used so successfully in the olden days as a healing element. Of course that was previous to when milk became a contaminated product in urban area stock yards being fed mash from the grain fermenting/stills, etc, when it began causing problems rather than being a solution.
History aside, it made me wonder what in our environment could stop the production of IgA in a person's body, and if a mother doesn't pass it to a baby with breast feeding, can it's production be stimulated differently or somehow later in life? For instance, you've heard of parent animals eating food, mashing it up in their own mouths and then the babies eat it out of their mouths, or the moms regurgitate it and the babies eat it. (Yuk) But what if that is a good way to transfer/stimulate immune qualities? What if doing that killed lots of germs in the food and/or stimulated IgA development in the offspring? Or if you really want to push the envelope, is there any evolutionary / biological background behind all the movies portraying the magical healing power of tears? Are they based on old stories, old myths? What do old myths try to convey sometimes? Is there anything more to tears than their power to emotionally cleanse a situation? If a body is stressed or sick, what are it's innate defenses?
Anyway, during the polio epidemic, could what people were putting in their mouths with their food be causing select IgA deficiency - like lead arsenate on fruit, so that the saliva was no longer effective in fighting a polio germ? When the oral polio vaccine caused so many problems, was it causing the problems in the population of people (subgroup) who already had a selective IgA deficiency? Is that why some people were protected but some were injured? Should people be tested for IgA deficiency PRIOR to having to take an oral polio vaccine, especially in areas with arsenic in environment? Are there environments without arsenic anymore?
Geez! Anyway, at the time I was trying to think a few of these things out, I remember reading 2 things: at the time, vaccination was contraindicated in primary immune deficiencies. It was IN WRITING! Secondly, the topic of immunoglobin therapy was in the mix, obviously, and looked to have a few risks of its own but if the doctor made sure you weren't in the high risk reaction-to-immunoglobin group, it would be really helpful. (On a side note I don't appreciate that Baxter labs - home of the 'will transport contaminated hazmat fluids on trains' mentality and CSL - host of the flu shot that sent so many kids into seizures down in Australia and had quite a majority of seriously bad reactions on medalert that year, appear to be a couple of the suppliers. Hmm, cause a problem - make money on the solution, anyone?
But I remember reading that there was an oral treatment, getting excited, and then immediately feeling disappointed when following that link that it wasn't being used in the U.S. at the time. But I hoped that it maybe would change. Maybe it was in Europe? Maybe it's changed by now!
Posted by: Jenny | September 12, 2013 at 02:47 PM
For those parents who have access to open-minded and well-informed doctors for their children I suggest asking about plasmapheresis (plasma exchange) treatment. It has been used for many years now alongside IVIG, or sometimes even on its own, for treatment of various auto/immune diseases.
It is relatively safe and inexpensive (as IV treatments go!) and greatly raises chances of success when used alongside IVIG.
Plasmapheresis has even been used on its own or alongside IVIG and other immune therapies for treatment of intractable EPILEPSY as well as several forms of ENCEPHALITIS, with considerable success!
Posted by: What about plasmapheresis?!? | September 12, 2013 at 10:22 AM
Thanks Teresa for this article. We have one foot in autism, and one in PANDAS. Hate it, really hate it. Not too many doc's know about or even believe in PANDAS/PANS. Thank goodness for cunningham panel, so we can prove anti brain antibodies. Of course, the steroid burst reaction proved it to us.
Laura, I've never heard of an oral IgG supplement. Do You need a dr to get it ? We are waiting for 2nd cunningham panel and don't know if our insurance will cover IVIG. We can handle a few out of pocket IVIG's, but if our child needs more we would be taking out a loan or fighting the insurance company.
Is anyone doing parental blood transfusions with these kids? It would be cheaper, yes? Or does our blood contain the same antibodies ? Can we get money to do our own study ?
Posted by: Theresa 66 | September 12, 2013 at 08:46 AM
I assume everyone is aware of the Andy Cutler protocol. His books can be purchased at www.noamalgam.com and there is a shorter, easier to use book called, Fight Autism and Win which is specific for chelating children.
Posted by: Rebecca Lee | September 12, 2013 at 06:34 AM
Thank you to those who let me share about your child's progress with IVIG and to all of you here, who have shared more. Kanner found the behaviors "fascinating" but he missed the most important clues. I hope he knows that we forgive him. It was 70 years ago --- but we could use his assistance -- now -- to get things moving for medical treatments, support from Congressional hearings and overhaul (disposal) of NVICP.
Posted by: Teresa Conrick | September 11, 2013 at 09:43 PM
How to get from point A to point B? From where we are now - no clear or incorrect definition of the disorder with no clear protocols or standards of care, with insurance companies denying coverage... to where we need to be so that all children will get the best care?
Posted by: Linda | September 11, 2013 at 08:10 PM
I've always said autism is an immune issue. My ds12 has PANDAS, mycoplasma and hit on 2 lyme bands as well. I'm probably forgetting something too!
We've done 6 rounds of IVIG and started to see improvements - then got cut off in an insurance dispute in June (long story!) - but alas no IVIG.
Proof it works is my nonverbal, doctor hating kiddo everyday - multiple times a day points to his forearm and asks for his IVIG! This is the kid I have to drag into the clinic and hold down! But he KNOWS it helps him. He's been a mess since we got cut off in June!
Posted by: diane | September 11, 2013 at 05:53 PM
My son's dysfunctional immune system ( netropenia, low IgG subclasses, low IgM, high eosiniphils ) did not "qualify" for IVIG depsite numerous hospitalizations for infection and out of control asthma. I began him on an oral IgG supplement and he has not been in the hospital since, he has "mormal" colds ( couple of days and is better), asthma controllable, better socialization and greatly improved reading comprehension. We recently tried to reduce the dose to see if he still needed it. He reported feeling spacey, out of control of his body, impulsive, unable to concentrate. He also came down with the worst cold he'd had in 2 years. We resumed the usual dose and those symptoms went away and he has been doing well.
A properly functioning immune system is crucial.
Posted by: Laura | September 11, 2013 at 05:31 PM
Carol
It was the Mid 80s I do believe that 60 minutes did a segment on OCD and Strep.
Posted by: Benedetta | September 11, 2013 at 02:41 PM
One thing that many PANDAS/PANS parents are finding is that their kids have previously undiagnosed Lyme Disease and co-infections such as Babesia, Bartonella, Mycoplasma and Erlichia. For us, this was the turning point, after two IVIG's failed to have a lasting impact. Antibiotics are usually the primary treatment for Lyme, but much more is required. Interestingly, these additional treatments include many of the biomed treatments used by the autism community - GF/CF/SF, heavy metal detox, methylation supplements, vitamin/mineral supplementation, homeopathy, herbs, etc. In addition, some PANDAS families are finding that mold in the home is another culprit impairing the immune system.
I've often wondered if pre-existing infections load the gun and the vaccines pull the trigger.
Several years ago, I was told by a PANDAS advocate that Sue Swedo (leading PANDAS/PANS researcher at NIMH) "knows" that PANDAS and autism are related. In other words, she knows (and therefore the NIH knows) that autism is a NeuroImmune disease.
Posted by: PANDAS Mom | September 11, 2013 at 01:45 PM
Teresa,
Thank you for writing this piece. This says it all really:
"Autism is not a mystery. It is for far too many, an immune system needing much medical help. It's time to make that a priority in research, in clinical trials and in every doctor's office around the world."
Our children are being denied proper medical intervention for illnesses that are real,exist, and have viable treatment options awaiting them. Waiting for someone to develop a medication bandaid so they can make billions is also not what should be sought.
Many of us realize that most efforts by Autism Speaks and their Autism Treatment Network, overseas research to prohibit access by the FDA for research data, and denying the obvious connections of environmental toxins and from vaccines will not be the answer.
As a community we have to ensure our children have access to proper medical care and the means to be able to do so. IVIG is one of the things that should be covered and if a medical necessity for PANDAS, is in many cases.
Medical necessity for ASD is a quandary and when you ask people "What has been deemed a medical necessary intervertion for autism?" they usually cannot respond. That is when you know there is a problem with what we've been having to call autism which is not behavior, but medical for many.
Folks please write letters too on your personal stories to the IACC for public comment. We need to make some noice about medical choice for individuals with ASD. Individuals are are losing their lives because they don't have it.
Thank you again Teresa!
Posted by: Carolyn | September 11, 2013 at 01:17 PM
My son was in a double-blinded, placebo-controlled IVIG therapy study thru UC Irvine (I don't know that the study was ever published). Alas, he had no improvement.
Posted by: Ted | September 11, 2013 at 01:03 PM
My son's underlying PANDAS issue is due to Lyme Disease. While his blood tests came back negative, he still tested positive via kinesiology methods. (There is a 60% false negative error of reporting with the current Lyme testing.) I was a bit uncertain when the MD told me my son had Lyme, however, we went forward with treatment. She ordered 8 rounds of Rife / Frequency treatment and what a difference it's made in my son's life last year. I continue to keep him on a small dose of antibiotics (1 teaspoon a day) because we do still see flairs. Lyme can hide in the body and believe me I'm not saying our lives have been a cake walk. BUT - my son does listen to logic now, is much more happy and healthy. We have gone to the edge of medicine and improved the energy in our home as well as considering Inert Gas Devices that target our Etheric bodies as this is where virus and bacteria first begin their attack. I am grateful that IVIG has helped so many because I feel that more autistic children can benefit and that virus and bacteria are at the root. It has not been an option for our family due to cost and lack of insurance coverage on it. I will continue to push the envelope in looking at alternative ways to improve my son's health while the government and scientific community bury their heads in the sands. Homeopathic detox, supplements including B-12, essential oils, a clean diet - these are all areas that can be cost effective. I encourage everyone to do your own research and listen to your heart.
Posted by: Son In Recovery | September 11, 2013 at 12:51 PM
anyone have a lucky lotto ticket? Bank robbery plans? Seriously...should I sell my house? To pay for this?
I have TWO with autism, seizures, neuroimmune disease, PANDAS...
Where is our justice?
Where is the pseudo concern?
I can prove how disordered, dysfunctioned their immune systems are...both did the Cunningham Pandas Panel..
Posted by: kathy blanco | September 11, 2013 at 12:01 PM
Don't forget about TSO when discussing immune modulating treatments for autism.
Posted by: Sarah P | September 11, 2013 at 11:36 AM
For those of you who tried the therapy, how were you able to do that?
Posted by: jennifer | September 11, 2013 at 11:11 AM
When was strep infection first associated with OCD? I did a cursory search not too long ago and I think it was mid-seventies. Anybody know for sure?
Posted by: Carol | September 11, 2013 at 11:00 AM
Some news from Pr. Luc Montagnier :
*Late august he attended in the south of France a meeting called NIR 2013 ( http://www.icnirs2013.org/ ). Montagnier is still standing his point on the microbial track and the use of Near Infrared Spectroscopy to detect it ( instead of a wide shared opposition of the academics )
* Late july ( 5-7)he attended an international symposium in Lambaréné (Africa/Gabon ; the place where Dr A. Schweitzer once worked)). The symposium was concerned with infectious disease research in africa ( see : http://schweitzerlambarene100.com/en/home )- next year a report is schedulded to evaluate the work done along the lines defined by a declaration-. Inteviewed by a gabonese journalist, Montagnier said that allthough an effective HIV vaccine should be welcomed, he was more prone to directing the research towards finding efficient inhibitors of bacterial co-factors «Mais je l’ai toujours dit, il y a d’autres facteurs qui expliquent que le virus se développe davantage en Afrique. Ce sont des facteurs de coïnfection, pour une part, comme le paludisme, la tuberculose, les parasitoses, la pauvreté, le manque d’hygiène ou l’assimilation anormale du système immunitaire, qui favorisent la transmission du virus et sa progression chez les personnes infectées. Mais je pense qu’il y a maintenant un autre facteur beaucoup plus spécifique, un facteur infectieux et bactérien qui est davantage présent sur le continent africain qu’ailleurs. Ceci pourrait peut-être expliquer pourquoi les Africains, voire certaines populations africaines sont plus touchées que d’autres. Ce n’est pas une question liée au comportement sexuel ou de mœurs, c’est une question essentiellement une question biologique» (see : http://gabonreview.com/blog/schweitzer-100-le-point-du-pr-montagnier-sur-le-sida/)
* Chronimed, a group of clinicians Montagnier is working with, reported lately on a paper from Gustavo Román (M.D., a neurologist and neuroepidemiologist who directs the Nantz National Alzheimer Center) http://www.sciencedaily.com/releases/2013/08/130813111730.htm G. Roman declared "It is increasingly apparent to us that autism is caused by environmental factors in most cases, not by genetics" [ but AoA surely reported on this declaration, didn't it ?)
Truly yours
Posted by: Fièvre | September 11, 2013 at 10:57 AM
Hello, Please sign the next petition to recognize autism as a neuro immune disease:
http://www.change.org/petitions/world-governments-pursue-medical-treatment-for-autism-adhd-and-other-neuroimmune-diseases-2
Thanks
Posted by: Luis | September 11, 2013 at 10:31 AM
Bob,
The first step toward scientific advancement would be to take the money out of science. Today all research is focused on what will bring the greatest monetary reward for those funding it. If discoveries improve lives, that's only a side benefit. The goal is money.
The American continent was explored because they were looking for gold and wealth. Our society has to put a value on life above materialism. That anyone, especially a child, could go without treatment for lack of money, when the cost to the consumer is inflated far beyond the actual cost to produce the treatment, is something I can't understand.
Posted by: Linda | September 11, 2013 at 10:08 AM
We were lucky to try IVIG when my son was 8. He got a monthly IVIG for 18 months. It was the best thing he ever had. All areas of his difficulties improved. Sorry insurance stopped covering it and we had to stop.
Posted by: Andrea | September 11, 2013 at 08:52 AM
Sorry I never got around to answering your email about this Teresa, and thank you for a fantastic article. My son received one high dose IVIG (2gm/kg) six months ago for strep induced PANDAS. He also has dx of Aspergers and PDD/NOS. His PANDAS is in remission and, more amazingly, his ASD symptoms improved greatly. I have a bullet point update from his school's speech therapist outlining all the improvements post IVIG including better eye contact, more fluent speech, better socialization, improved ability to follow directions etc. we also continue with long term antibiotics and biomedical interventions. His doctors think he may eventually lose his ASD diagnosis.
The hardest part about it was insurance wouldn't pay for anything and the IVIG alone cost us $6000 --and that was the wholesale discount! It's been a miracle for my son though so if we needed to do it again I would rob a bank if I had to. You can't put a price tag on giving your child a better future.
Posted by: Chrissy | September 11, 2013 at 08:43 AM
My sister-in-law is on IVIGs monthly.
She has good insurance and they are paying a lot for it, but she is still unable to pay her share of the bill.
That tells you just how expensive it is.
You all do know that the medical doctors have been encouraged by the NIH to reduce prescriptions of antibiotics to the masses don't you?
With NIH access to radio and news media they have pushed their view on the public too --- that too many antibiotics are being given when not needed and thus causing antibiotic resistant strains of pathogenic microbes.
They claim that people do not take all their antibiotics -- that they start feeling better and stop. This allows a few weaken microbes that survived the initial assault of antibiotics to regroup and become stronger. . That might be true -- but from what I have observed with mine -- DOCOTRS did not give enough antibiotics to BEGIN WITH, to get rid of what ever my family had.
And I am beginning to believe the idiots have totally missed some kind of bovine - very slow growing TB.
That surely is not possilbe is it?
Surely?
Yet it seems that every symptom from chrons, inflammation of the bones in the spine, even TB in the endocrine system affecting the adrenal glands matches.
Tell me that they are not that foolish.
And those TB skin test are not reliable at all???? What??
Posted by: Benedetta | September 11, 2013 at 08:11 AM
My son was diagnosed with PANDAS way back in 1997, when the whole concept of PANDAS was in its infancy. He never had the IVIG treatment; the jury was still out on whether they were really useful, so I was unable to get anyone to try.
What did help somewhat was an immunologist who came up with the idea of giving 21 day rounds of antibiotics as opposed to the standard 10 day rounds. For my son, the 10 day treatment left just enough of the bacteria in place that the most resistant bacteria would then grow back. The combination of finally getting past all of the infections, and leaving puberty behind, made a dramatic difference.
Posted by: Vicki Hill | September 11, 2013 at 07:55 AM
Thomas Insell .. IACC .. 2010:
"2010 – “Do infectious agents influence the development of autism, anxiety, or mood disorders? This remains a frontier area for NIMH research."
Theresa Conrick .. editor Age of Autism .. today .. 2013
"Autism is not a mystery. It is for far too many, an immune system needing much medical help. It's time to make that a priority in research, in clinical trials and in every doctor's office around the world."
Thank God our forebearers had the courage, convictions and foresight to explore the mysteries that awaited them beyond was then called the "western frontier" of the undeveloped United States.
Dr. Thomas Insell .. at least three years after publicly recognizing the "frontier area for NIMH" lies in the scientific exploration of "infectious agents influence the development of autism, anxiety, or mood disorders" .. has allowed that critical frontier area for the NIMH to remain UNEXPLORED.
These are desperate times .. our children and country are in desperate need of men who are willing to explore the frontiers of science as did the men who explored and conqured the frontiers of our country.
Just recognizing a frontier exists is not enough .. it requires courage, convictions and foresight to explore the mysteries of frontiers .. and .. using Dr. Insell's lack of leadership as our guide .. either he lacks all three of those critical qualities .. or .. he is incapable or unwilling to act upon them.
The time has come to let someone else take our children and country forward to explore amd conquer a scientific frontier that promises a better, healthier life for us all.
How much longer must our children and country suffer the consequences of Insell's poor leadership?
Posted by: Bob Moffitt | September 11, 2013 at 06:45 AM