Wow...I cant believe the idiocy of those people who wrote the notes, then they just drop them and leave? Wow.

But am I surprised? No, not really. Because having worked in government at one time, I realize that like many organizations, the problems are at the "top". In essence, in these kinds of goverment sectors, leadership can seldom be described as "the cream rising to the top"...its more like "sh*t floats"! Pardon my french. LOL

Its time that parents of autistic kids start demanding answers. I am glad you brought all this to light.

amber it isof quite poerful and severe anxiety producing fr me too because the energy around me can be of too much and it is of like my being picks up all the emotional states of the people in the room, it is of like being hyper aware of all things around you and not know what to do with it. I to be of can be of so consumed with the sad of sufferings that cant cope of life because feel as if in constant overload from all of this. I to be of so very very hyper reactive and responsive to almost all things to this life and it can create a emotional break down with in me because cant have the words to tell others of what I to be of feeling when it happens, there is of no words for it.

Benedetta,

Thanks for your kind words. I always have hope for Megan's recovery but she is so affected in a multi-system way. I have hope that we will have more answers and treatments for those who are so very impaired.

Sondra,

Again, thanks for talking about your physical,emotional and sensory issues. It is helpful for me as I can get a sense of how my daughter feels and why she may respond the way she does.

I am so sorry that you have such intense illness that has been denied for so long. I am relieved that you have found Dr. Natowicz and I hope you find answers and relief from your pains. Your description here:

"adreneline surges one gets if they are of to feel as if htey will fall or get of a sudden fear much strong to them , for self it feels like electrical surging in my arms that radiate to my hands and center mostly to my wrist area and finers."

sounds absolutely horrible and it makes me think that my daughter has something similar based on her behaviors. She bites her wrist when agitated (or is she so agitated that biting her wrist relieves the pain?)and I have always wondered why in that area. Other children also bite the wrist so it is not just Megan. She also is bothered by her knuckles, and some will appear swollen, and then she rubs them, bites them until they have callouses. Her newest thing is to take rubber bands and string them around her finger to almost relieve the pain buy cutting off circulation. It is of course, not a safe thing but is showing me that this is a progressive situation. Some thoughts I had were fibrin - connective tissue, possible Strep in the joints (or something similar- arthritis),or some type of unknown inflammatory condition.

I will continue to have hope that both you and Megan, and all of the people suffering with autism will get answers and a cure to the pains and debilitating conditions that you have to deal with every day. We are fighting for all of you. This has gone on too long and your sense of "humanity and right" is exactly what has been lacking by too many who have let you and so many suffer with the "It's all in your head" mentality.

Bless you.

Bless you Sondra! You left such a powerful comment but my favorite part is this :

"so the real issues of to correct the health issues, cure that part of us and if in the doing a recovery from autism happens then one can rejoice if not one needs to learn to rejoice in the human loved one that exists and learn to knwo then as they are.... that does not mean do nothing it means keep loving them by doing all one can do to improve quality of life..."

PERFECTLY said Sondra.

I've told many people, with regard to my 7 year old daughter's recovery, we treated her medical issues and her autism disappeared. Whether her autism disappeared or not, her underlying medical issues demanded treatment. Every person deserves treatment for medical issues...and in our case, praise God, that as her health improved so did her function.

I am a mom with a 5 year old child with autism. Thanks to DAN! and their biomed approaches, he is much better, though far from cured. About a decade ago I worked for an NIH in an administrative office directly under Story Landis. From my experience, I've found NIH to be a sinkhole of tax dollars -- their "goals" are to do "research" but curing diseases is secondary (unless there's a new drug to sell -- you know NIH funds a lot of research done by the big pharmaceutical companies). Anyway, my coworker pointed out to me one day "have you noticed, when Dr. Landis uses the bathroom, she doesn't wash her hands? I've seen it over and over, she just walks out of the stall and exits the bathroom." Well, unfortunately, I had to see it for myself -- ughh! But why would someone of such a high rank not do the basics of what we're all told about disease prevention? It couldn't be ignorance! Arrogance? Bad judgment? With people like Story Landis leading the way, I have no hope for any real progress from the IACC.

Sondra,

I always appreciate your words and insight. When you talk about your past and what you have been through, it is profoundly stark and tears me up.

Your comments-

"many will gain in skills. so the real issues of to correct the health issues, cure that part of us and if in the doing a recovery from autism happens then one can rejoice if not one needs to learn to rejoice in the human loved one that exists and learn to knwo then as they are.... that does not mean do nothing it means keep loving them by doing all one can do to improve quality of life..."

...is my life with my daughter. She is not recovered, not close, but the quality of her life has vastly improved due to focusing on the health of her body as well as letting her know how much she is loved and what a wonderful person she is. She has no words but I know she knows all of this.

Thank you.

The late Bernard Rimland, I have heard, referred to the Combating Autism Act as the 'Pretending to Combat Autism Act'.

I heart Natasa and all the hyperinformed parents who post here.

Ah, I see. So my three year old potty-trained son's explosive diarrhea, which began just weeks after his first MMR/Varicella vaccines and caused him to have multiple accidents per day in his pants, is really just comorbid to the autism that he developed just days after the same vaccines. This makes me feel so much better and I'm sure my son will be relieved when I explain it to him, provided I can get him to understand and stop the constant hand flapping and jumping that developed comorbid to the autism, again - two days after his MMR/Varicella.

Below is a partial summary the recent research into abnormal biological markers in people with autism, organized under nine headings: Neurological abnormalities; Abnormality of the immune function and chronic inflammation; Gastronintestinal problems; Oxidative stress; Mitochondrial dysfunction Neurotransmitter abnormalities; Hormonal abnormalities; Auditory, visual, tactile and oral sensory processing disorders and motor difficulties; Reduced cerebral blood flow and cerebral edema.

The numbers in brackets are PubMed references for each study - the articles can be accessed through links on www.autismcalciumchannelopathy.com

=======================================

Neurological abnormalities in autism:

Various neuropathological and MRI studies have pointed to the following neurological abnormalities in autism:

· significantly elevated calcium levels in autistic brains compared to controls, followed by elevations of mitochondrial aspartate/glutamate carrier rates and mitochondrial metabolism rates (18607376) also see Mitochondrial dysfunction below

· abnormal neuronal migration in both brainstem and cerebellum and disorganised columns of the cerebral cortex.

· significant reduction in granular and Purkinje cell numbers, often accompanied by gliosis (proliferation of astrocytes in damaged areas of the brain).

· marked active/ongoing neuroglial activation and neuroinflammation (see Immunity and Inflammation below).

· abnormalities of cortical development has been observed in some cases, including areas of increased cortical thickness, high neuronal density, neuronal disorganization and poor differention of neurons.

· abnormalities in brain size and volume, recently linked to increased tissue water content in brain matter

· reduced blood flow to parts of the brain

· abnormalities in the size and densitiy of neurons and less dendritic branching, with increased neuron density and shorter connecting fibers, pointing to delays in neuronal maturation.

· autoantibodies to brain proteins, notably to myelin basic protein, neuron-axon filament protein and glial fibrillary acidic protein (see Immunity/Inflammation).

(15546155, 18435417, 15749244, 9619192, 18607376> , 9758336, 16819561, 14519452, 16214373, 6924017)

Abnormal immune function and chronic inflammation in autism

Results of numerous studies point to an abnormality of the immune function in autism, as well as active, ongoing inflammation in the GI tract, the brain and the cerebrospinal fluid (CSF).

A recent study by Vargas et al (15546155) investigated the presence of immune activation in postmortem brain specimens and CFS from subjects with autism. The authors found active neuroinflammation in multiple areas of the brain, for example in the cerebral cortex and white matter, and in the cerebellum. A marked migroglial and astroglial activation was also found, as well as the presence of an altered cytokine pattern, with macrophage chemoattractant protein (MCP)-1 and tumor growth factor-beta1 (TGF-beta1) being the most prevalent cytokines. There was also an accumulation of macrophages and monocytes, and a marked absence of lymphocytes and antibodies, pointing toward an innate neuroimmune activation with the absence of adaptive immune system/T cell activation in the brain. In addition, an enhanced proinflammatory cytokine profile was observed in the CSF, including once more a marked increase in MCP-1. These observations resemble findings in other neurological disorders in which elevations in cytokine levels is associated with the pathogenesis of neuroinflammation, neurotoxicity and neuronal injury and subsequent behavioural and cognitive impairments, for example HIV-associated dementia and multiple sclerosis (15288500, 11282546, 16875710, 9852582). Animal experiments illustrate that, during early pre and postnatal development, inflammatory cytokine challenge can induce various psychological, behavioral and cognitive impairments (17804539, 16147952, 9852582). At the same time the expression of many cytokines, including MCP-1, in neurons and glial cells seems to be upregulated by increased intracellular calcium triggered by membrane depolarisation (11102468, 10943723).

Another investigation into inflammatory markers in the brain tissue of patients with autisms revealed significantly increased levels of several proinflammatory cytokines (TNF-alpha, IL-6 and GM-CSF, IFN-gamma, IL-8). The Th1/Th2 ratio was also significantly increased in ASD patients, suggesting that localized brain inflammation and autoimmune disorder may be involved in the pathogenesis of ASD (19157572).

Various serological findings further confirm the presence of immune system dysregulation and active inflammation in autism - raised levels of proinflammatory cytokines have often been observed in blood of patients with autism, with significant increases of IFN-gamma, IL-6 and TNF-alpha. These results are followed by findings of decreased peripheral lymphocyte numbers, incomplete or partial T cell activation following stimulation, decreased NK cells activity, dysregulated apoptosis mechanisms, imbalances of serum immunoglobulin levels, increased numbers of monocytes and abnormal T helper cell (Th1/Th2) ratio, with a Th2 predominance, and without the compensatory increase in the regulatory cytokine IL-10 (16698940, 16360218). It is of interest to note that, following increased levels of TGF-beta1 in brain specimen as observed by Vargas et al, this cytokine was found to be significantly lower in the blood of adult patients with autism compared to controls (17030376).

Another relevant observation is the elevation of cerebrospinal fluid levels of TNF-alpha compared to its serum levels in subjects with autism. The observed ratio of 53.7:1 is significantly higher than the elevations reported for other pathological states for which cerebrospinal fluid and serum tumor necrosis factor-alpha levels have been simultaneously measured (17560496).

It has been suggested that prenatal viral infection might dysregulate fetal immune system, resulting in viral tolerance in autism (139400). Studies showing altered T-cell subsets raised suspicions about possibile autoimmune aspects of autism and several studies pointed to association of the risk of autism to immune genes located in the human leukocyte antigen (HLA) (16720216, 15694999). The immune system uses the HLAs to differentiate self cells and non-self cells and some of them are linked with higher risk of autoimmune disorders. Animal studies show that behavioural changes follow onset of autoimmune disease and can be reversed through immune-suppressive treatments (8559794), and although various autoantibodies to brain antigens have been observed in autism, the results of those studies are often conflicting. In addition to the inconsistent findings the question has been raised as to whether those autoantibodies would be pathogenic contributors or mere consequences of the the disorder. Of note in this context is the finding pointing to possible association of virus serology and brain autoantibodies in autism (9756729). One study found that children with autism had a significantly higher percent seropositivity of anti-nuclear antibodies. Anti-nuclear antibody seropositivity was significantly higher in autistic children with a family history of autoimmunity than those without such history, and also had significant positive associations with disease severity, mental retardation and electroencephalogram abnormalities (19135624). Autistic children were found to have significantly higher serum anti-myelin-associated glycoprotein antibodies than healthy children. Family history of autoimmunity in autistic children was significantly higher than controls. Anti-myelin-associated glycoprotein serum levels were significantly higher in autistic children with than those without such history (19073846).

A study looking at several markers of concomitant autoimmunity and immune tolerance found highly elevated circulating IgA and IgG autoantibodies to casein and gluten dietary proteins in autism sample compared to controls. Circulating anti-measles, anti-mumps and anti-rubella IgG were positive in only 50%, 73.3% and 53.3% of autistic children previously immunised by MMR, as compared to 100% positivity in the control group. Anti-cytomegalovirus CMV IgG was also investigated and was positive in 43.3% of the autistic children as compared to 7% in the control group (17974154).

Gastrointestinal dysfunction in autism

Individuals with autistic spectrum disorders tend to suffer from various, sometimes severe gastrointestinal problems. Children with ASD have a much higher rate of gastrointestinal (GI) symptoms when compared with children of either typical development or another developmental disorder. The most frequent complaints are chronic constipation and/or diarrhea (frequently accompanied by indigested or partially digested food in stools), gaseousness, and abdominal discomfort and distension (14523189). Decreased sulfation capacity of the liver, pathologic intestinal permeability, increased secretory response to intravenous secretin injection, and decreased digestive enzyme activities have been reported in many children with autism. Treatment of digestive problems is reported to have positive effects on autistic behaviour in some individuals (8888921, 12010627, 1176974).

Defects of innate immune responses in ASD children with GI problems have been detected, and intestinal pathology, including ileocolonic lymphoid nodular hyperplasia (LNH) and mucosal inflammation, with enhanced pro-inflammatory cytokine production, have been noted in various studies. A majority of the children were shown to have chronic swelling of the lymphoid tissue lining the intestines, particularly near where the small and large intestines meet, and chronic inflammation of the large intestine. There is a consistent profile of CD3+ lymphocyte cytokines in the small and large intestinal mucosa of these ASD children, involving increased pro-inflammatory and decreased regulatory activities (16494951, 15741748, 11007230, 15622451). The mucosal immunopathology in children with autism is reported to be suggestive of autoimmune lesion and is apparently distinct from other inflammatory bowel diseases (11986981, 15031638)). See also Immune and Inflammation.

One study examining histologic findings in children with autism revealed high incidence of grade I or II reflux esophagitis, chronic gastritis and chronic duodenitis. The number of Paneth cells in the duodenal crypts was significantly elevated in autistic children compared to controls. Low intestinal carbohydrate digestive enzyme activity was reported in over half of the children with autism, although there was no abnormality found in pancreatic function. Seventy-five percent of the autistic children had an increased pancreatico-biliary fluid output after intravenous secretin administration, suggesting an upregulation of secretin receptors in the pancreas and liver (10547242).

There are also reports of prominent epithelium damage (11241044), and of significant alterations in the upper and lower intestinal flora of children with autism. One striking finding was complete absence of non-spore-forming anaerobes and microaerophilic bacteria from control children and significant numbers of such bacteria from children with autism. The faecal flora of ASD patients was found to contain a higher incidence of the Clostridium histolyticum group of bacteria than that of healthy children (1552850, 12173102, 16157555).

Oxidative stress in autism

Oxidative stress is defined as an imbalance between pro-oxidants and anti-oxidants, resulting in damage to cell by reactive oxygen species (ROS). During times of environmental stress ROS levels can increase dramatically which can result in significant damage to cell structures, especially in absence of anti-oxidant defences, such as the enzymes superoxide dismutase, catalase, glutathione peroxidase and glutathione reductase or antioxidant vitamins A, C and E and polyphenol antioxidants. There is mounting evidence that abnormalities of ROS and nitric oxide (NO) may underlie a wide range of neuropsychiatric disorders. Abnormal methionine metabolism, high levels of homocysteine and oxidative stress are also generally associated with neuropsychiatric disorders. NO signalling has been implicated in a number of physiological functions such as noradrenaline and dopamine releases. It is thought to have neuroprotective effects at low to moderate concentrations, but excessive NO production can cause oxidative stress to neurons thus impairing their function.

Studies comparing the level of homocysteine and other biomarkers in children with autism to controls showed that in children with autism there were highter levels of homocysteine, which was negatively correlated with glutathione peroxidase activity, low human paraoxonase 1 arylesterase activity, suboptimal levels of vitamin B 12 (16297937, 12445495) and increased levels of NO (12691871, 14960298).

Lipid peroxidation was found to be elevated in autism indicating increased oxidative stress. Moderate to dramatic increases in isoprostane levels (16081262, 16908745), decreased levels of phosphatidylethanolamine and increased levels phosphatidylserine (16766163) were observed in children with autism as compared to controls. Levels of major antioxidant proteins transferrin (iron-binding protein) and ceruloplasmin (copper-binding protein) were found to be significantly reduced in sera of autistic children. A strong correlation was observed between reduced levels of these proteins and loss of previously acquired language skills (15363659).

Another study measured levels of metabolites in methionine pathways in autistic children and found that plasma methionine and the ratio of S-adenosylmethionine (SAM) to S-adenosyl-homocysteine (SAH), an indicator of methylation capacity, were significantly decreased in the autistic children relative to controls. In addition, plasma levels of cysteine, glutathione, and the ratio of reduced to oxidized glutathione, indicative of antioxidant capacity and redox homeostasis, were significantly decreased in autistic group. The same study evaluated common polymorphic variants known to modulate these metabolic pathways in 360 autistic children and 205 controls. Differences in allele frequency and/or significant gene-gene interactions were found for relevant genes encoding the reduced folate carrier (RFC 80G), transcobalamin II (TCN2 776G), catechol- O-methyltransferase (COMT 472G), methylenetetrahydrofolate reductase (MTHFR 677C and 1298A), and glutathione-S-transferase (GST M1) (16917939).

Oxidative damage in autism is also associated with altered expression of brain neurotrophins critical for normal brain growth and differentiation. An increase in 3-nitrotyrosine (3-NT), a marker of oxidative stress damage to proteins in autistic cerebella has been reported. Altered levels of brain NT-3 are likely to contribute to autistic pathology not only by affecting brain axonal targeting and synapse formation but also by further exacerbating oxidative stress and possibly contributing to Purkinje cell abnormalities (19357934).

A study looking into cellular and mitochondrial glutathione redox imbalance in lymphoblastoid cells derived from children with autism found that, compared to controls, autism LCLs exhibit a reduced glutathione reserve capacity in both cytosol and mitochondria that may compromise antioxidant defense and detoxification capacity under prooxidant conditions (19307255).

Mitochondrial dysfunction in autism

Mitochondrial dysfunction with defects in oxidative phosphorylation has been suspected in autism and several recent findings that show abnormalities in mitochondrial enzyme activities that support hypothesis. Postmortem examination of autistic brains revealed significantly elevated calcium levels in autistic brains compared to controls, followed by elevations of mitochondrial aspartate/glutamate carrier rates and mitochondrial metabolism and oxydation rates (18607376, also see Brain and Oxidative Stress sections above).

When compared to controls autistic patients show significantly lower carnitine levels, followed by elevated levels of lactate, aspartate aminotransferase, creatine kinase and significantly elevated levels of alanine and ammonia (16566887, 15739723, 15679182). A pilot study investigating brain high energy phosphate and membrane phospholipid metabolism in individuals with autism found decreased levels of phosphocreatine and esterified ends (alpha ATP + alpha ADP + dinucleotides + diphosphosugars) compared to the controls. When the metabolite levels were compared with neuropsychologic and language test scores, a common pattern of correlations was observed across measures in the autistic group, wherein as test performance declined, levels of high energy phosphate compounds and of membrane building blocks decreased, and levels of membrane breakdown products increased. The authors concluded that the results of the study provided tentative evidence of alterations in brain energy and phospholipid metabolism in autism that correlate with the level of neuropsychologic and language deficits (8373914). This was further confirmed by another study finding the impairment of energy metabolism in autistic patients which could be correlated to the oxidative stress (19376103).
Also see above - Oxidative Stress

Neurotransmitter abnormalities in autism

Abnormalities in neurotransmitter systems have frequently been recorded in autism. Clinical observations include both elevated and lowered levels of various neurotransmitters compared to controls, including alterations in monoamine metabolism [3654486, 2653386, 3215884], neurotransmitter peptides [9018016, 9315980], with considerably raised levels of beta-endorphin (for vasopressin/oxytocin see Hormones) and altered activities of cholinergic receptors, with binding of muscarinic M(1) receptor being up to 30% and that of nicotinic receptors being 65%-73% lower in the autistic group compared to controls [11431227]. Postmortem brain examination noted abnormalities of the glutamate neurotransmitter system in autism, with specific abnormalities in the AMPA-type glutamate receptors and glutamate transporters in the cerebellum [11706102]. Expression of several types of GABA receptors is altered in brains of subjects with autism, with levels being significantly reduced in autism compared to controls [18821008, 19002745].

Dysregulations of serotonergic systems in particular have been documented, such as abnormalities in brain serotonin sythesis, with significant reductions in synthesis capacity compared to controls [10072042, 9382481], while at the same time plasma levels of serotonin and free thryptophan appear to be on average 30-50% percent higher in individuals with autism [6204248]. Autoantibodies to serotonin receptors [9067002] and reduced receptor binding have also been recorded [16648340]. Of note is that one study found correlation of elevated plasma serotonin levels and the the major histocompatibility complex (MHC) types associated with autism [8904735].

Relative to expression and function of nicotinic receptors in autism, significantly lowered binding of some agonists to nicotinic receptors has been observed. For example binding of the agonist epibatidine in cortical areas to was up to 73% lower in autism group compared to controls. As with serotonine receptors, some of the nicotinic receptors have been noted to be significantly permeable to calcium and so able to regulate several neuronal processes…. Of interest are the preliminary reports of therapeutic action of galantamine in autism [15152789, 17069550], considering that neuroprotective actions of galantamine are thought to be linked to its modulation of nicotinic receptors [12649296].

A postmortem study revealed greatly reduced levels of glutamic acid decarboxylase (GAD) 65 and 67 kDa proteins in several areas of the brains of individuals with autism [12372652].This was confirmed by more recent results that showing GAD67 mRNA level reduced by 40% in the autistic group when compared to controls [17235515]. Another study found serum levels of glutamate in the patients with autism were significantly higher than those of normal controls [16863675].

Hormonal abnormalities in autism

Abnormalities in hormonal metabolism are frequently observed in individuals with autism, with several studies observing abnormal levels of many hormons and their receptors compared to healthy controls, as well as abnormal hormonal secretion rhythms [2713159, 1904373, 12959423, 10808042].

For example the analysis of the Hypothalamic-Pituitary-Adrenocortical (HPA) system responses observed more variable circadian rhythm as well as significant elevations in cortisol following exposure to a novel stimulus in children with autism compared to controls. This exaggerated cortisol response is indicative of dysfunction of the HPA system in autism (16005570). Over-reaction of the endocrine system to insulin stress in autism has been recorded in another study, whereas the experimental stress of insulin-induced hypoglycemia showed slower recovery of blood glucose, much faster cortisol response and elevation of growth hormone levels compared to controls (1176974, 2870051). Low levels of insulin-like growth factor-I (IGF-I) in cerebrospinal fluid have also been observed (16904022).

Metabolic disorders of serotonin and dopamine systems have been suggested in autism, with approximately thirty percent of individuals with autism exhibiting high levels of serotonin, simultanous with lowered levels of melatonin (see Neurotransmitters). Melatonin is converted from serotonin by several enzymes of the pinealocytes in the pineal gland, including 5-HT N-acetyl transferase and 5-hydroxyindole-O-methyltransferase. Results of the studies looking at sleep disturbances in autism suggest that both dyssomnias and parasomnias are very prevalent in the disorders - people with autism frequently experience sleep disorders and exhibit atypical sleep architecture (10722958, 15705609, 17001527). Further evidence of dysfunction of pineal endocrine system in autism was obtained by looking at alterations of the light and dark circadian rhythm of melatonin, where none of autistic patient showed a normal melatonin circadian rhythm, together with once again significantly lower levels of this hormone (11455326).

Leptin is a hormone linked to melatonin that plays an important role in amongst other things regulation of appetite and metabolism. Results from a recent study have demonstrated significant differences in leptin concentrations between children with autism and controls (17347881).

Auditory, visual, tactile and oral sensory processing disorders and motor difficulties in autism

Individuals with autism often present with auditory, visual, tactile and oral sensory processing disorders, as well as various forms of motor difficulties, including dyspraxia (occasionally linked to low muscle tone), dystonia (involuntary, sustained muscle contractions) and ataxia (16940314, 17016677, 15514415, 16903124, 12639336). Visual disturbances in autism often include abnormalities of colour perception (16598434) and weak visual coherence. Retinal dysfunction in autism has been suggested, as well as deficits in visual processing in dorsal cortex (3341467, 15958508). Abnormal pain perception is sometimes present in autism, as well as self-injurious behaviour.

Dyspraxia is a disorder of coordination that can also be described as a difficulty with planning a sequence of coordinated movements, or in the case of ideo-motor dyspraxia, a difficulty with executing a known plan. Various areas of difficulty can include speech and language, fine motor control (eg handwriting or holding pencil in a correct way), poor spacial awareness and timing and balance of body movements and difficulty combining movements, poor physical play skills (throwing and catching a ball) and difficulty in manipulating small objects. Ataxia refers more specifically to a failure of muscle control in limbs, often resulting in a lack of balance and coordination and abnormal gait.

Reduced cerebral blood flow and cerebral edema in autism

Results of several studies have shown abnormal platelet reactivity and altered blood flow in children with autism. Following these findings it has been suggested that platelet and vascular endothelium activation could be one of the contributing factors to the development and clinical manifestations of the disorder (16908745). Relative to this the following case reports are of particular interest, both describing cases of inflammation of brain blood vessels resulting in loss of language and emergence of symptoms of autism. In both cases administration of nicardipine lead to recovery of language and behaviour (1373338, 11008286).

PET and SPECT scans in autistic children show a decreased cerebral blood floow in some regions of the brain (12077922, 10960047, 7790938) and cerebral water content was found to be raised in brain grey matter in children with autism (16924017). A model has been suggested in which the observed gray matter abnormality could be inflammatory (see Immunity-Inflammation section below). This finding of celebral edema at the same time offered an alternative explanation for enlarged brain size in autism, which up to then had been hypothesised to be due to lack ‘pruning’ of neurons during development.

what exactly is your purpose of sitting on IACC panel, what are you supposed to be contributing? Is it the case of you not being aware of all those findings? Or do you mean to say that the above does not constitute a multisystem disorder?

Thanks Katie for all your efforts and these updates it is much appreciated.

Thank you for another revealing note about what is happening at the IACC.

Dr. Landis's inadvertent candor is but the latest illustration of the contempt held by NIH IACC members for parents who believe that their children are sick and not afflicted with some vague conceptual syndrome like "autism."

People like Storey Landis and Tom Insel will continue their contemptuous behavior as long as we parents allow them to do so. No matter how articulate or passionate the statements made by our parent representatives the response they will receive from the likes of Landis, Insel and Janvier is eye-rolling disrespect. Not only are these public officials contemptuous of parents they have no respect for our nation's legal process.((Janvier is only a quasi public-official-as the AAP representative she better fits the category of private interest lobbyist).

If there exists evidence that children were injured by vaccines then our nation's legal system should provide a fair process for that child and his parents to obtain justice. If public officials denigrate the legal compensation process and regard parents advocating for their sick kids as no more than money grubbing liars - then there is no meaningful conversation to be had with them. In fact what is occurring is a bureaucratic charade in which the bureaucrats are striving to make it appear that they are listening, when in fact they are dismissing.

That is why I repeat my view that we parents should stop trying to convince these NIH people that we are virtuous and right. They will never agree. They look at us as gutter animals willing to do anything to make a buck.

We should respond in kind to those who have no respect for us and the suffering of our children.

We should be looking not to convince them of our rectitude; we should be organizing ourselves to defeat them as the enemies of our children.

Bob Krakow
Parent
Trial Lawyer (and proud of it)

Thanks for the report Katie. I can't even put all my thoughs into words right now. Landis' comments are offensive and mean spirited.

Parents filed their claims in the NVICP to secure financial help for their children's care, not for some big pay day. To imply otherwise is wrong.

Our children are sick and suffering. We were reminded again at a recent neurology visit that Michelle is facing death unless we can get her seizures under control. So far medications are not working. She is facing likely neuro-surgery. SUDEP, grand mal seizure clustering, GI disease, osteoporosis, blindness, autism - isn't that multi system?

There is no compassion and nothing to be gained from someone like this.

Parents accuse a doctor of not acknowledging a key component of many of their children's disorder...This is highly offensive because she hasn't personally seen it.

Yet, doctors accuse parents of making stuff up about their children's condition for the purpose of getting money...and this is not highly offensive.

Wow. Insult a doctor: highly offensive. Insult a parent: par for the course.

Great panel we got going here, eh?

The notes reinforce it is all about the money and not about truth and helping sick kids

Unbelievable.

Thank you, Katie again. Your posts are so good and so helpful.

What is really, really bad is not that they are wanting to look into the awards given to vaccine injury children in the past, but the fact that I know more about this disease than they do?
They are suppose to be really smart people?
They act like this multisystem Inflammation of the blood vessels is the first time they have ever heard of this???
Am I understanding this right? Please someone tell me I am way off on my understanding?

By the way, whoever snagged these notes after the meeting is AWESOME.

I tend to agree with those who say talking to Insel & the IACC is a waste of time because their job is to perpetuate the cover-up. But I am very glad Ms. Wright and others are keeping tabs on them.

I wish we could resort to ACT-UP like tactics but it's hard when you have a sick child to care for and a job you can't afford to lose.

I to love much so when truth is of exprssed in such a way to show us who is of really our enemy and who really is of for us and is of there because they really do care. Kim thanks for this.

It angers of me because yes it is of a full body issues. I to ahve been suffered health issues all of life , currently seeing of a Marvin Natowicz in Cleveland Clinic Ohio for to look at possible mitochondrial disease as a possible cause of so much health issues to me.
sondra

Sneering at suffering children and their parents--what kind of person does that?

Oh wait, now I know.

Okay, that is disgusting!
Would she say that about people who sue others for wrongful death? I received a cash settlement when my first husband was killed. It wasn't a "wind-fall". It still does not take away the pain. I would rather that he be alive and I would not have the settlement.
The thought that parents are getting "free money" in vaccine court is unbelievable. I am sure that every parent who has received compensation would rather have a healthy child, then any amount of money.

UNBELIEVABLE!

I certainly hope that Story Landis reads the medical histories of children whose cases are filed in the National Vaccine Injury Compensation Program. Maybe the outpouring of misery will be enough to crack her stony soul.

And I hope she sees that the NVICP special masters eschewed that handy excuse word "coincidence," which lately is being vomited from the mouths of public health officials possessing the ability to read bullet points -- and not much more.

If that fails, then a mass diaper mailing is in order to provide a first-hand education about the medical damage involved in "autism."

The reason Lyn Redwood was "pushing for autism as a multi-symptom disorder" was because autism is a mutli-symptom disorder. Story, you may now stop your wondering, and, most importantly, your wandering.

I'm ready for my second post on this.

Her comment about vaccine injuries and "looking at kids who have gotten awards" makes it sound like they are on stage and just performed some feat to win out over the other kids. Winning at vaccine court means the evidence has shown injury- hardly a win there Dr. Landis.

Then Matt's notes were not really his opinion but sounding like he is offering what he has heard others say (how lame is that?) I have heard the cochlear implant analogy before and it is not even close to what has happened to children injured by vaccines, subsequently diagnosed with "autism" and then parents trying desperately to recover them while seeking justice and endlessly trying to change the vaccine program. Get a clue, Matt!

Then his other comment:

"There are advocacy groups claiming that it is more like homosexuality" is just beyond bizarre and shows a discriminatory hint of the neurodiverse infiltration into this meeting. Now if Matt meant like AIDS - maybe he means the vaccine issue but I doubt Matt has that in his heart to explore or understand. He is a parrot just mouthing off a bunch of useless and incongruent theories.

Then there is the Ed comment.

"Exactly [the] point Ed was making."

Now could Ed be Dr. Ed(win) Cook from here in Chicago who testified against children with an autism diagnosis in the Autism Omnibus cases?
http://www.uscfc.uscourts.gov/sites/default/files/autism/Expert%20Reports/Cedillo_98-916V/Ex_N_Cook_Report_98-916.pdf

He is a psychiatrist and a "geneticist" which makes it convenient to treat, lecture, do research on autism and receive nifty NIH gene money :

http://www.nih.gov/news/health/jan2008/nimh-10.htm
"The gene, CNTNAP2, makes a protein that enables brain cells to communicate with each other through chemical signals and appears to play a role in brain cell development. Previous studies have implicated the gene in autism, and in this study researchers were able to link a specific variation in its structure to the disease."

"Results of the study were reported online January 10 in the American Journal of Human Genetics, by Aravinda Chakravarti, Ph.D., Dan E. Arking, Ph.D., and colleagues from the Johns Hopkins University School of Medicine, with Edwin Cook, M.D., and colleagues from the University of Illinois at Chicago."

"Autism is highly heritable. Identifying the genes involved is crucial to our ability to map out the pathology of this isolating and sometimes terribly disabling disease, which currently has no cure," said NIMH Director Thomas R. Insel, M.D."

And here we are back to Dr.Insel, his gene hunters, his IACC henchmen, his family in the vaccine business and so why again is he on IACC?

Are you f&$%ing kidding me?????
Time to flood some inboxes.
[email protected]
[email protected]

Truly maddening....

Some irony in the preprinted message on top of page 2 note ...

"Leave a Trail of Genuis" ....

Guys,

Start with the Nuremberg Principles.
--
Then take a long hard look at your Congress
ask yourself which of them were part of it.
--
Which of them were too busy taking the money, to worry about the citizens or the country.
--
Ask yourself what happened to America - land of the free home of the bold.

Robin Rowlands

RE: the reference to the cochlear implant/deaf community and homosexuality. I believe that would have been in response to some neurodiversity propaganda, i.e. autism is just another way of being, leave it alone. It's bad enough the IACC is a bunch of impotent ignoramuses, now we have ND cranks telling them autism is just an alternate lifestyle in need of acceptance.
Bottom line: since when do we expect the government to be able to solve really tough problems? I think their last "accomplishment" was the a-bomb in 1945.

KC is right: She seems to be projecting that everyone is a money-grubbing bitch. But take heart, guys, the fact that Dr. Oz said as much as he did shows me that he sees which way the wind is blowing and he is bailing the vaccine ship before he looks stupid. People like Landis are still desperately fighting. But, Dr. Oz, being such a trusted public figure has figured out that he will look pretty stupid, in light of all the evidence mounting, if he stays silent on the issue, or even worse if he is in collusion with it. Smart man.

"Leave a trail of genius," reads the Marriott notepad.

Dr. Landis clearly is incapable of such...

Does anyone know if there are rules of engagement between IACC members. There needs to be more transparency for the stakeholders!!!! This is how were spending our taxpayers money??

It appears that many on the IACC are not interested in finding a solution. Arrggh!

Does anyone know the process of creating a FOIA request? I'd like to put in a request for all written and electronic communications between IACC members.

This evidence should cause changes in IACC memebership but how can we stop this from happening again?

Unfortunately, none of this should be surprising. The IACC is the legacy of the inaptly named "Combatting Autism Act." When it became clear that Congress had no intention of passing a bill that would actually look into the areas that needed exploration, some of the organizations that had banded together to support the bill withdrew their endorsement. Others made a well-intentioned choice to keep supporting the bill in the hope of getting a "seat at the table." It is clear that some of the seats given out are less equal than others. Our seat is at the children's table, and the big people will just roll their eyes when we make too much noise.

At some point I lost my anger over stuff like this. To me it's just sad now. Incredibly, horrifyingly pathetic. Speaking for myself, I'm not looking for a payday, I knew early along that that would never happen. I just want a safe vaccine program for all children. It's not too much to ask. Drs like Landis and Insel, etc etc will never get it. Judging by this report, thanks Katie, this is clearly the distorted view they have of us.

Every time I read another article on this so called IACC I feel sick to my stomach. Who put this group together in the first place? How do we reach a larger audience? We're just preaching to the choir here. How do we get people removed from the IACC? And Lyn Redwood, how can you stand sitting next to them?

We need to raise hell but with whom? I am so disappointed with Obama. I didn't expect it to get worse with this administration. My neice (husband's side)who is pregnant quit tennis under her doctor's advise but she did get the flu shot. Even if the gov't figures out they've been wrong how are they going to convince doctors? Of course, I advised my neice not to get the flu shot. What do I know, I'm just an idiot that recovered my child from autism because of information from other misinformed moms on the internet!

Dear Arrogant Federal Bureaucrat:

Thank you so much.

Your Friend,

Autism Dad in fly-over country

[email protected]

301-496-9746

just think, all i needed is to have as a.s.d. child and i would have it made!! thats it- we are all trying to benifit from a vaccine injury

It appears to me that the sole goal of the IACC is to protect the vaccination program. These doctors have no concern for the thousands of Americans living with autism directly or as a family member. Not everyone in the autism community has a vested or even a passing interest in vaccine causation - they TOO are being thrown aside, their interests unserved. There should be an outcry from every rafter of the autism community.

It is no accident people like Dr. Yvette Janvier, Dr. Matt State and Dr. Landis have come to occupy their seats on the IACC. I suspect they were "hand picked" to protect the vested interests of public health agencies and their "partners" within the vaccine industry.

Indeed, their eager participation in the sorry decisions of the IACC appears guided by their strong, personal, "religious faith" in vaccines...as evidenced by their consistently hostile rejection of any research that may threaten their "religious conviction" in the "miracle" of vaccines.

History is replete with instances where "science" was betrayed in favor of protecting "religious" beliefs...but... hopefully...the day is fast approaching where undeniable scientific "truth" will eventually prevail over the religious "dogma" that reigns over today's IACC.

I don't think I have ever read anything so offensive about our poor sick children. And considering who said it and what position they hold in directing autism research and treatments this is outrageous.

What can we do to take action on this?

This can not be brushed aside.

"Dr." Landis should be removed from their position from the IACC immediately.

I just clicked on the NIH NIND biog for Dr Landis, which was completely blank apart from a name, contact details and a photograph. However, on the strip at the top is the motto 'National Institute of Neurological Disorders and Stroke - reducing the burden of neurological disease...'. Her note makes it quite clear that this exactly what she is doing: reducing the burden to the state:

http://www.ninds.nih.gov/find_people/ninds/bio_dr_story_landis.htm

And our tax dollars pay for this bullshit...I recently visited with and filmed a family and their beautiful autistic son....they are NOT plugged into the autism community, and know very little about the physical symptoms of other autistic children. I heard the same story from the mouths of the parents, which included chronic illness, GI problems, bacterial infections, lack of speech, motor skill issues....I am happy to report that the boy is slowly recovering. I walked away from the filming thinking...HOW THE HELL CAN THE MEDICAL COMMUNITY DENY THERE IS A PROBLEM WITH OUR CHILDREN?
Our autistic children are the sickest, however, a vast majority of typical children are chronically sick too.
The family I met uttered not one word about getting rich off of autism, their ONLY concern was healing their child.
The power of the ego/mind of the mainstream medical community to remain in denial is truly amazing.

PS Do these people still believe that the world is flat?

The system has no shame and these people have no shame.

Two further thoughts come to mind:

1) It may not be about money for us but it is for Dr Landis.

2) Why after all these years does she think that Lynn Redwood's concerns are novel? What enables her to have a view if the point has only just occured to her?

The answer is that these people will never ever consider things which are detrimental to their interest, which has nothing whatever to do with science, justice and decency. It is just bureaucratic handwashing.

John,
Implicit in this note is an admission that vaccines cause autism and the powers that be are worried how many other issues will be linked to vaccines.

If we go back to the arguments about whether smoking was bad for you, we see a similar pattern of suppressed research and records by those who new full well that smoking was harmful.

The difference is that the American and British Government had not taken on financial liability for the consequences

If they had we would no doubt still be advised that smoking was good for us or at least taken on balance beneficial.

We should force these individuals to answer the question as to whether they still feel that the current vacination regime is safe.

We should ask whether they fear such advice might be seen in years to come when the truth emerges about what was known and suppressed as complicity in a crime against humanity

Robin Rowlands