The Oklahoman / NewsOK's annual "Strong and Healthy Oklahoma - A Total Health Event" will be Saturday March 29th from 9am to 3pm at the Coca-Cola Bricktown Events Center in OKC. The event is free. The featured speaker will be Dr. Bryan Jepson from Thoughtful House http://www.thoughtfulhouse.org/ in Austin, Texas. He will lecture about children's health crisis, including autism, at 10am, 12:00pm and 2:00pm. Dr. Jepson is a DAN!, Defeat Autism Now physician, who has written a book titled, “Changing the Course in Autism”.
Thursday, March 27, 2008
It was a sobering event for all concerned, and it could soon become known as the Conference Call heard 'round the world.
The teleconference was scheduled by a little known CDC agency called the Clinical Immunization Safety Assessment (CISA) Network, a consortium of six research centers working on "immunization-associated health risks," in conjunction with the CDC's Immunization Safety Office and the health insurance lobby -- whose companies cover some 200 million Americans.
The hot topic of the day was mitochondria - the little powerhouses within each cell that convert food and oxygen into energy for use by the body. Recent news events have implicated mitochondria in at least one case of regressive autism, following normal development.
To read more click here.
Wednesday, March 26, 2008
Autism recovery stories: Amanda's journey
Sara DiFucci didn't start using "biomedical" interventions because she thought they would cure her daughter Amanda's autism spectrum disorder. Her motivation was simply "to treat the metabolic train wreck inside her body."
But "it just so happened that as I (used alternative interventions) my child began to lose her 'autistic symptoms,'" DiFucci wrote. "Many just disappeared such as the toe walking, hitting herself in the head and eczema."
Biomedical therapies used to treat physical symptoms related to autism can be costly and often produce discouraging results. In addition to 46 hours a week of traditional intervention (including occupational and speech therapy, school programming and ABA) Amanda underwent at least 22 different alternative or "biomedical" treatments.
But while many of the treatments didn't work, three of them--trans-dermal chelation, melatonin and hyperbaric oxygen therapy-- did.
Here's Amanda's story in Sara's words:
"I've been married for 13 years and have two beautiful children. Jake is my six year old neuro-typical son. Amanda is nine. She was diagnosed with an autism spectrum disorder, PDD-NOS, in April, 2002, just two months shy of her 4th birthday.
Looking back at her 4th birthday party it was like having a party without the child. Amanda had no desire to participate. She sat on the couch and watched TV. while the other children were playing on the jump bouncer, getting their faces painted and watching the clown make balloon animals.
Amanda said nothing during her party but protested with temper tantrums when we sang happy birthday and again when we tried to gently encourage her to open her presents. The party went on while Amanda watched the same Disney Sing-A-Long video for the millionth time in a row.
It still pains me to think of that time in her life when she avoided interaction with others at all costs and the amount of stress she was under on a daily basis was unfathomable.
Our story is like many other families with minor changes in the details. We had a typical developing baby who met all the major milestones on or well ahead of schedule. She became sick shortly after her 15 month round of vaccines and was hospitalized for dehydration.
At that point, the regression into her new world began. My easygoing, happy toddler began to change and was always in fight or flight mode. Yelling and crying all the time. She hardly slept and was very irritable. There was very little joy in her life.
Family members began making subtle hints that they thought something was wrong just after her 2nd birthday but we were in complete denial and their questioning fell on deaf ears. (Why doesn’t she answer when you call her name? Why does she line up her toys like that? Why doesn’t she play with the other kids?).
Her descent into autism was a slow process and we passed off the odd behaviors she developed such as repeatedly hitting her head, lining up her toys, crying all the time, obsession with certain videos and toys and toe walking as part of Amanda's unique developing personality. We thought as she matured she would grow out of these behaviors.
My mother was a pediatric nurse for the last 40 years at a very large hospital and she too began to voice concern that there was "a change" in Amanda but she didn’t have any idea what was happening. In her 40 years of nursing she only saw one case of autism and that child’s autism presented differently.
About a year later we became concerned that Amanda’s language wasn’t developing appropriately. She appeared to be lagging further and further behind her peers. She wasn't "growing out of it." She had the ability to label but at three years old she could not answer simple questions or follow simple one-step directions so we went to the pediatrician for advice and he said “nothing was wrong."
We began to question some new physical signs such as developing chronic constipation and the severe eczema that Amanda would scratch until she bled. We were told these weren't things out of the ordinary. I went back to the same doctor nine months later and again voiced concerns that her behaviors appeared to be getting worse and more odd behaviors developed.
Many sensory issues began to emerge (aversion to loud noises, tags in clothing, not wanting to touch sand or finger paint). I told him I was beginning to be concerned for her safety too because she would often wander away. I once found her outside in the backyard by herself at 3 a.m. and we had to place combination pad locks on the doors because she was able to manipulate every other type of lock we tried. Again, our concerns were brushed off as "normal."
I decided to seek out help on my own and made an appointment with a developmental pediatrician who gave us the dark news. I felt like my whole world ended. When I asked the pediatrician "where to go for help" she didn’t have any resources for me except for a book about hyperlexia. It was a very lonely feeling.
I began making arrangements for traditional therapies such as speech and occupational therapy but I wanted answers as to why my child descended into this new world of hers. Upon researching the Internet, I learned of DAN! (Defeat Autism Now) and made an appointment to do some diagnostic testing even though I did not believe Amanda had any physical problems aside from constipation and eczema.
She was the kid who NEVER got sick. I would pride myself that I was doing such a good job of keeping her healthy so that she never caught a cold. Little did I know that my daughter was very sick and I learned from initial laboratory tests that my child had auto-immune issues.
In addition to an overload of heavy metals (especially lead, mercury and aluminum), food allergies, oxidative stress, disordered amino acids, demyelination, abnormal EEG, reduced glutathione, leaky gut and improper food absorption.
We have tried a large assortment of biomedical interventions. Some worked really well and some did nothing. One thing that makes our story unique is that when Amanda turned six we moved across country due to my husband’s job. We stopped all traditional therapies and had every intention of starting them back up again when we got settled.
At the same time we began a new method of chelation, TD-DMPS (trans-dermal). We tried chelation (oral DMSA) in the past but Amanda had some trouble with overgrowth of yeast in her gut which created additional constipation so we had to stop.
Eight weeks into trying the new chelating agent, TD-DMPS Amanda became potty trained virtually overnight. Over the next few months Amanda’s teachers were noticing a boom in expressive language; she was becoming more sociable and willingly joining the group.
The temper tantrums decreased, many of her sensory issues diminished. We saw more improvement in Amanda in those six months without using traditional intervention than we did in the prior two year and we were able to tease out what intervention was making the difference.
During this time Amanda did attend school, however, did not have any additional therapies as she did previously. Biomedical intervention became our main focus. Chelation was working! Six months later we began adding speech therapy and ABA back into Amanda’s regimen of therapies and she no longer required private occupational therapy.
Next to chelation, the intervention I would place second is the use of melatonin. Amanda was the type of child who seemed to lack any need for sleep. She was one of those kids that had trouble falling asleep and would wake in the middle of the night many times at 2-3am and would be up until the following night. The lack of sleep was the most trying time for me as a mother. When she began using melatonin I felt as though we hit the jackpot.
"Melatonin is considered by some to be an antioxidant vitamin. It’s a vitamin only to those who cannot make enough of it in their own bodies, and this group appears to include a majority of autistic spectrum individuals.”
The third treatment that helped Amanda the most is mild hyperbaric oxygen therapy also known as mHBOT. From the TACA website:
"HBOT is a safe, effective way to get more oxygen into the body at the cellular level by using pressurized air chambers.
"According to the Laws of Physics, an increase in atmospheric pressure allows for more gas to be dissolved into any given liquid. Oxygen exists as a gas at room temperature, and the human body is made up almost entirely of water. The chambers used at the Hyperbaric Therapy Center use filtered ambient air with an additional oxygen concentrator to safely administer oxygen to the body with many therapeutic benefits. By allowing more oxygen to penetrate otherwise oxygen deficient areas, relief for many common ailments can be sought, because mHBOT enables the body to carry out oxygen dependent processes by dissolving oxygen directly into the blood, plasma and cerebrospinal fluids.”
We didn’t see any big 'wow!' changes with Amanda that some parents report. For Amanda, she was experiencing slow but consistent gains using biomedical treatment, however, when we added mHBOT the gains began to come much quicker especially in the areas of speech and language. She was able to hold longer conversations, inquisitive about the meanings of new words, processing issues began to disappear.
We currently do 1.5 hours dives 2-3 times per week. We have a chamber in our home. This was by far the most costly biomedical intervention we have incurred.
I did not view using biomedical intervention as the tool to “treat” Amanda’s autism. I was treating the metabolic train wreck inside her body. It just so happened as I did this my child began to lose her “autistic” symptoms. Many just disappeared such as the toe walking, hitting herself in the head and eczema.
No one would suspect the living nightmare Amanda was once held captive by. Today, the average eye would not be able to make an autism connection. Last year, the school system called in an outside psychologist to develop a behavioral intervention plan because Amanda can still become stressed in certain situations. The psychologist said that while observing the classroom she was not the child he would have picked out from the crowd as the one who had autism.
Today Amanda is the happiest we have ever seen her. Her health is being restored. She attends a mainstream 3rd grade class at Conley Elementary School in Huntley. She is very bright academically (A/B student). She can appear awkward in certain social situations but she has friends and children genuinely like her.
I don’t consider Amanda "fully" recovered, however, I can finally see the light at the end of the tunnel. My child is gong to be o.k. She’s going to overcome autism. No amount of biomedical intervention will teach Amanda the social skills and non-verbal communication skills she still lacks. We continue to use traditional therapies to address those issues.
There wasn't an organization like TACA available to help mentor/guide me through the maze of information. I was overwhelmed with all the information. I had no plan as to where to start, what was most important to do first, how to obtain services, or how to advocate for my child.
There wasn’t a journey guide such as the one TACA has today that helps parents survive the first year upon diagnosis. I had to sort most things out on my own and many times I would find conflicting information and have to try to determine on my own what was right.
Treating a child with autism is an enormous task and I found solitude in other parents who had children with autism that were able to give me answers. I just wish I found a way to connect with these families early on. TACA does just this.
We offer families hope, support and assistance in speeding up the cycle time from diagnosis to getting a parent/caregiver the appropriate information that will lead to effective treatment and support. TACA strengthens community.
Biomedical intervention is not guaranteed to work nor is it easy to implement, however, the payoff can be enormous. What helped my child may not help another, however, one will never know unless they try. Treating autism is a marathon not a sprint and it takes times so don’t give up if the first few interventions don’t help your child.
Find an experienced parent to help – they often know more than the doctor. Never give up. Autism is treatable and recovery does happen."
This well conducted study used reliable analysis techniques to compare autistic children across a broad range of intelligences to age-matched control children. Despite the newspaper headlines and coverage, the study did not look at the effects of the MMR jab and autism. Instead, it tested and compared the urine of autistic boys with the urine of boys without autism. The researchers conclude that there were no differences between the levels of peptides in the groups and say they have effectively disproved the 'leaky gut theory'. However, further research is needed to establish whether a casein and gluten-free diet has other effects on autism.
The researchers call for more studies into special diet as a treatment for autism, but they do not suggest that their research has any implication for the discredited MMR vaccine/autism theory.
Where did the story come from?
Dr Hilary Cass from the Great Ormond Street Hospital for Children and colleagues from around England and Scotland carried out the research. The authors acknowledge the support of the research and development fund of the Royal Hospital for Sick Children in Edinburgh and the Chief Scientist Office in Scotland. Competing interests were declared. The study was published in Archives of Disease in Childhood, a peer-reviewed medical journal.
What kind of scientific study was this?
This was a case control study that compared 65 boys with autism, aged between five and 11 years, with 158 control boys of a similar age.
The researchers say that, for a number of years, it has been thought that the urine of children with autism contains opioid peptides that originate from outside the body. Opioid peptides are chemical compounds that are so called because they resemble morphine. They can be produced by the body and through the digestion of foods such as grain and milk. Grains such as wheat, rye, barley and oats contain the protein gluten, that produces opioid peptides in the gut, while milk produces another variety, casein.
One theory for the development of autism is the 'leaky gut theory': the idea that children with autism become sensitive to gluten. The gluten is thought to inflame the small bowel. The resulting damage allows opioid peptides from food to be absorbed into the blood and then enter the urine. Before the opioid peptides in the blood are excreted they are assumed to cross into the brain and result in the symptoms of autism. Previous research has proposed that excluding casein and gluten (milk and grains) from the diet might help children with autism by reducing the amount of circulating opioid peptides.
The theory proposes that opioid peptides found in urine reflect a disturbance in the integrity of the gut epithelium (i.e. a leaky gut). Proponents of the theory hope that the peptides can act as a diagnostic marker for autism and predict that a diet excluding gluten and casein could help to treat children with autistic symptoms.
This study aimed to determine the occurrence of the peptides in the urine of children who have autism and those who do not. The researchers recruited 65 boys from two hospitals specialising in autistic spectrum disorders in London. For the control group, 202 non-autistic boys of similar age were recruited from mainstream infant and primary schools in the same area. A questionnaire was given to the parents of the controls to 'screen out' children with possible neurological or psychiatric difficulties. Forty of the controls were excluded from the study as their parents did not complete the questionnaire, or the boys' results were abnormal or borderline.
Urine samples were collected from all the children and analysed using equipment that separates the chemical in a liquid (HPLC). Other equipment was used to identify small and fragile biological molecules, such as the opioid peptides (MALDI-TOF MS).
What were the results of the study?
The researchers say that their study finds no evidence of opioid peptides in the urine of boys with autism or similar disorders.
After adjusting for the amount of creatinine in the urine, which is a measure of kidney function, the researchers found no significant differences in the urinary profiles (shown by HPLC) between groups of boys with or without autism. In those cases where HPLC showed peaks in the locations at which opioid peptides might be expected to be found, further testing by mass spectrometry (MALDI-TOF) showed that these peaks did not represent opioid peptides.
What interpretations did the researchers draw from these results?
The researchers say that "given the lack of evidence for any opioid peptiduria in children with autism it can neither serve as a biomedical marker for autism, nor be employed to predict or monitor response to a casein and gluten exclusion diet".
The researchers say that these findings effectively disprove the 'leaky gut theory', which predicts that these proteins should be found in the urine of autistic children. They suggest that healthcare professionals and parents should stop testing children with autism for urinary opioid peptides, and note that commercial laboratories around the world still widely advertise these tests on the internet.
What does the NHS Knowledge Service make of this study?
This study has a number of strengths. The researchers used accepted and applied definitions of autism and selected children across a broad range of intelligence. The urine testing appears to have been conducted reliably and the researchers further analysed the peptide peaks found by chromatography (HPLC) with advanced mass spectroscopy techniques (MALDI-TOF). They acknowledge some limitations, however, including:
- The autistic children were selected from tertiary or specialist centres. This may mean that they had more severe autism than that commonly found in the community.
- It was not possible to match the autistic children with low IQ to control children with the same level of IQ. Strictly speaking, this means that the groups were not balanced at the start of the study. However, as no significant differences were found in the peptide levels between any of the groups that were examined, it is unlikely that a link would have been found between peptide levels and IQ either.
The researchers say that there is no evidence that opioid peptides can leak through the gut and cause autism in children. However, further research is needed to establish whether a casein and gluten-free diet has other effects on autism.
The researchers do not comment on any implications of their study with regard to the MMR vaccine. Immunisation is topical and attracts the reader's attention, but well-designed research into other theories of how autism is caused is needed.
Links to the headlines
Leaky gut autism theory doubted. BBC News, March 18 2008
Study finds no link between MMR jab and autism. Daily Mail, March 18 2008
MMR vaccine 'does not cause autism'. The Daily Telegraph, March 18 2008
Links to the science
Absence of urinary opioid peptides in children with Autism.
Cass H, Gringras P, March J, et al.
Arch Dis Child. Published Online First: 12 March 2008.
This news comes from NHS Choices