What a horrific year for Colorado. My family was among those evacuated due to fire (click here for an amazing time lapse video of the first 36 hours of this fire). As of this moment, I am back in my home. But while my neighborhood was blessed with weather breaks and well timed rain that helped crush the Flagstaff Fire (still only 40% contained at the moment, but prognosis is good), thousands are displaced from their homes all over the state. And no doubt, a number of those are families affected by autism.
Evacuating sucks. We had our check list. But when it comes down to watching smoke and flames billowing in your neighborhood, it’s still pell mell. While my husband hurried home from work, I went through the motions: Vital records. Passports. Mortgage documents. Tax records. Photo albums (all of them? some of them? what about the hundreds of photos in boxes in the basement?). Health records. Check book (who uses those anymore?). Computers. Phones. Et cetera, et cetera. But I didn’t have boxes for any of this stuff. Into plastic garbage bags it went, which doesn’t help once at the destination – pawing through trash that isn’t yet trash is what this becomes. Then onto food, medications, supplements that might be needed. Again, what do I put all this in? How do I organize it at my destination? How many days’ clothing? Then cats. Two cats, one carrier. Oops. On and on. Anxiety froze my teen son while I scurried around, but after some prompts, he earnestly set about packing things dear to his heart: Model trains he painstakingly rebuilt, airbrushed, painted, and customized; a ceramic creation from school; some of his paintings and art work; a rosary given to him by his grandparents.
This is where it can become a totally different journey. Persons along the autism spectrum of any age – young child, school age, teen or adult – are likely to suffer much more anxiety or emotional reactivity than others in a fire evacuation – which is among the most anxiety provoking things imaginable. Routines and sameness become even more essential. We were fortunate to have a friend out of harm’s way but not too far from our home, with a big house, who was out of town and opened her home to us. When we arrived, we were free to cook our dinner and tend to our needs without interruption. It was as smooth a transition as could be hoped, and we were able to return home in about thirty hours. But how many families are not so lucky? Settled at our own dinner table this evening, with deep gratitude, we all thought about ways to help evacuee families affected by autism. Here’s our list:
– Ask what routines are most essential to this family or to the affected person’s well being. Respectfully allow those as possible, without judgment.
– Make grocery trips for needed foods, rather than assuming evacuees are up to the shop. After running laps in and out of the house to load a car, heading to the supermarket for forgotten essentials is the last thing a tired and stressed family needs.
– Buy exactly what is requested for foods, right down to brand preferences. People on the autism spectrum can have rigid food preferences and routines, while others use restricted diets essential to their functional ability. Varying off the food part of the routine can be extremely disruptive for a person with autism, or even akin to going off medication if they are using a special diet.
– Expect odd behavior as this person may work hard to manage escalated anxiety. My son’s suggestion: “Let them open and close doors, switch lights on and off, play with the vacuum cleaner, or whatever their obsession is, let them do it. They will need to focus a lot on it to stay calm.” I can go with this, within safe parameters.
– Think cats: When stressed, they retreat, and like to hide in small spaces. This can be true of youngsters with autism too. Create a separate space suited to the age – a big appliance box with pillows, a play tent, a small quiet room that can be closed off for reading, watching a DVD, or playing a computer game. Let the person with autism have this space if need be. Don’t insist that they socialize with your children or with anybody for that matter. They may be too overwhelmed, and unable to express that.
– Consider that loud and chaotic activity may be overload that leads to total meltdown for a person with autism. While typical kids might welcome a loud boisterous game or lots of giggling and squealing with the Wii as a distraction, these can push a child with autism over the falls. Check in with the evacuee family on tolerable noise levels for things like music, TV, how to best mix with other kids in the house, barking dogs, or kitchen noise. Help strategize ways to allow the person with autism to buffer that if need be.
– Support vigilance for the whereabouts of a child, teen, or adult with autism at all times. In a new and overwhelming setting, elopement or fleeing is common, and obviously dangerous. If you have a pool or are near water, this is paramount: Drowning is the top cause of death for children with autism.
– Don’t assume evacuees are at ease leaving an affected child in your hands, and don’t be offended if they aren’t. Do the errands for them instead, and let them comfort their loved one with autism in the new setting.
– An anxious child with autism is probably going to behave in disruptive and annoying ways, or may remain inconsolable and terror stricken. Don’t judge or offer parenting advice. Period. Instead, when you have time, read up on this parenting journey with authors like Tony Attwood or Patricia Bashe and Barbara Kirby.
– Don’t introduce pets to a child on the spectrum without first checking with the evacuee family on what is best. Some persons with autism adore dogs and other animals, while some are extremely anxious around them. Some with autism intuit how to handle and behave around pets while others may not. One affected child I met was delighted with a friend’s cat, but did not differentiate this from roughhousing with a dog or stuffed animal; luckily we separated the two before either was injured.
– Don’t talk about the affected person’s condition (child, teen, or adult) in front of them or assume they don’t understand you.
– Don’t give the affected person information about the fire, their home, or circumstances without first vetting protocol for this with the family. Don’t discuss details of the emergency that caused evacuation in earshot of the affected person with an assumption that they are not listening or understanding you. They may be acutely aware of and understanding what you are saying.
While many kids may regard being welcomed into a friend’s home in a crisis as a sleepover adventure, it may feel like a foreign and frightening land to a child with autism. Sensitivity to this difference can make all the difference for an evacuee family. For more information on how to help evacuees, visit HelpColoradoNow.org. My thanks go out to the incredible fire fighters who are up on Bear Mountain in the dark as I write this, and will be up there all night, defending our safety just a couple thousand feet below.
One of the first things you might hear about regarding nutrition tools for autism, besides special diets like GF CF or SCD, is vitamin B6 (pyridoxine). Why is it one of the most studied treatments for autism? Here’s what you should know.
– B6 is a vitamin – which means, we need to eat it. We can’t make our own supply. It has various metabolic forms that our body uses, including pyridoxal-5-phosphate (P5P), another popular supplement. Among its many jobs is supporting production of neurotransmitters like dopamine and serotonin – both of which have shown altered status in persons with autism.
– There is a long pedigree for B6’s success in treating seizures; about a third of persons with autism have seizure disorders. Deficiency of this vitamin can cause seizures or other neurological symptoms.
– There is also a long pedigree for using vitamin B6 therapeutically for psychiatric disorders, like schizophrenia, along with other nutrients.
– B6 is a water soluble vitamin, which means the body doesn’t store it. Whatever is not used is excreted in urine, usually within hours. If you’ve ever noticed bright yellow urine after taking a multivitamin with extra B6 in it, you are likely seeing some of this in your toilet!
– Bernard Rimland PhD, founder of the Autism Society of America and the Autism Research Institute, pioneered the use of B vitamins in the 1960s for his own son, who was affected by autism.
– B6 has low toxicity, with a good track record of being safe to use. High doses are usually well tolerated, with any side effects resolving once it is stopped.
So should your child supplement it? Will it help autism features? As always, the best strategy is to ask an experienced and licensed health care provider to help you assess your child’s total nutrition needs. B vitamins work en suite – together – with other nutrients and with food to support brain chemistry, extract energy from food, and help nerve impulse transmission. Giving just B6 alone in a high dose – without other B vitamins, magnesium, or adequate diet – may fail to produce any results. That said, it’s one of the safest nutrients to supplement. Here’s the scoop on B6 and autism:
– Children with autism may well need higher doses of vitamin B6 than healthy typical peers, for many reasons: Picky diets that lack vitamins, gut inflammation that impedes absorption of B vitamins, or gut microbial infections that eat up B vitamins before your child can absorb them. Mitochondrial disorders (inherited or acquired) can trigger higher need for B’s too, as can an inability (inherited or acquired) to convert B6 to its active form in cells. One study noted that indeed, children with autism had high levels of B6 but low levels of its metabolically active form P5P. This would mean that dozens of enzyme actions needed to balance neurotransmitters in the brain would not function to potential.
– A number of studies testing high dose B6 have showed benefits. In a survey of 7256 parents, 49% reported symptoms of autism improved in their children with B6 and magnesium supplement.
Where to start? Begin with a high purity, high potency multivitamin and mineral supplement for your child. Reputable brands are Kirkman Labs, ProThera, Pure Encapsulations, and many others. You can browse products I choose in my practice, in the NutritionCare.net virtual dispensary (use access code MyNCFC and PW 80303 – my office zip code – to set up your own account and start browsing.)
1) Decide on the format your child can accept: Liquid, powder, capsules, or chewables.
2) Choose a product that provides the entire B group of vitamins (B1, B2, B6, niacin, folic acid or folacin, B12 as a blend of methyl and cyanocobalamin, pantothenic acid, biotin) at potencies of at least 100% of daily recommended value. Make sure that this product also contains magnesium to at least 100 mg; more may be preferable. Some multi’s add P5P, such as Kirkman’s Spectrum Complete and Klaire Labs VitaSpectrum.
3) Let your child trial this multivitamin and mineral daily for 2 weeks, withdrawing if you note reactions or side effects.
4) Once it’s clear that your child is tolerating this well, consider adding a product that adds more P5P and magnesium, such as P5P with Magnesium from Klaire Labs or Kirkman Labs.
5) Give the additional P5P early in the day with the multi, not toward evening, as B vitamins are usually energizing and may keep kids awake if taken too late. A reasonable starting dose is 5 mg P5P for a 30 pound child; older children may benefit from 25mg P5P, which is well above usual intakes from food or ordinary supplements, but possibly beneficial for those with metabolic disorders that prevent conversion of B6 to P5P in the body.
6) Continue if you note benefits. Reported benefits include improved communication, less stereotypical behavior, less sound sensitivity, improved expressive language, improved attention, and less hyperactivity.
Caveat: Some children become hyper and agitated when given very high doses of P5P. Start low and go slow; withdraw if you see worsening hyperactivity. Your child may do fine on a lower dose, or may benefit from B6 more after treating bowel infections for yeast and other microbes (which also use B vitamins).
B6 is a promising, easy-to-test option for any child on the autism spectrum. Get input from parents who have succeeded and from your child’s health care team. If your child is using medications, it’s especially important to check with your doctor and pharmacist about drug-nutrient interactions.
Kids needing feeding clinic intervention are the pickiest of the picky. Their super picky appetites have frustrated their parents to no end. They tend to have more dental problems, get sick more often, and can have more developmental delays or behavior problems. They don’t eat well, have a very short list of acceptable foods, and don’t grow well as a result.
Why are they doing this? The feeding clinic approach doesn’t ask why, but operates from a cognitive approach – that is, it’s assumed kids are doing this by some choice on their part. Feeding clinics are part behavioral intervention, part social group (peer pressure is leveraged to help kids try more foods), and part occupational therapy. They try strategies to get little ones eating more, by pressuring them to push through texture aversions, gagging, squirreling food in their cheeks, spitting food out, or rigid beliefs about foods.
I’ve met a lot of feeding clinic flunkies – kids who stumped teams of psychologists, speech and language pathologists, GI doctors, and occupational therapists. What went wrong?
In some cases a swallowing issue is found, and an occupational therapist as well as a speech and language pathologist can help this. Otherwise, it’s often assumed that there is no physical rationale for the child’s eating pattern, that it is purely psychological.
But that’s rarely the whole story, in all the kids I’ve met with feeding problems this deep. I often end up finding a physiological backstory. And when that is defined, it can be fixed; when that is fixed, appetites can improve. Eating becomes a non-issue, stress for the entire household drops several notches, and the child can begin eating and growing normally again.
What physiological gaffes can create a picky eater monster? Here are the usual suspects:
1 – Reflux medication. These lower appetite over time, and make everything harder to absorb from the gut. My opinion? These medications are rightfully earning a bad reputation. They are over-prescribed for infants and children. They are associated with lesser bone density (and fractures in older adults), and lower digestive capacity in general. They make it harder for many nutrients to be absorbed, notably, minerals like calcium and iron, and vitamin B12. Reflux medicines also let fungal infections (Candida or yeast) flourish at the expense of healthy gut microflora. I have seen at least one case of stunting due to long term use of reflux medicine. Leaving a baby on this medication during crucial developmental years means optimal levels of nutrients will not reach brain, bones, and body tissues.
Reflux medications leave food sitting longer in the stomach, because they reduce digestion. Food will remain poorly digested. The result can be constipation or loose stools, bloating, gas, more reflux, and – never feeling very hungry. Strategies to wean off reflux medicines – and how to avoid them in the first place – are discussed in detail in Special Needs Kids Go Pharm-Free. Be sure to tell your doctor if you would like to wean this out of your child’s regimen.
2 – Intestinal candidiasis. This is a Candida (yeast) infection in the intestine or GI tract. While Candida microbes are a usual resident of a human gut, they can take over and grow too much. This makes kids more picky for sugary, starchy, smooth foods. A yeast-heavy GI tract also tends to have a pH that weakens digestion. The result is a little like too much reflux medication: Bloating, gas, constipation or loose stool, and picky appetite. Treating the yeast infection with the right medication, diet, herbal tools, or probiotics can move your child to eating healthfully and heartily. In my practice, I use stool and urine tests to detect how much yeast is growing in the gut, and to see what might herbs or medicines might best clear it out.
3 – Food sensitivities. Food allergy is not so hard to see: Usually there are hives, rashes, eczema, stomach pain, tingling at lips, tongue or throat, or vomiting. But food sensitivities can have few obvious symptoms, other than weak picky appetite. I test for these in my practice with a blood test called ELISA IgG to specific foods. We find problem foods, and figure out how to rotate them. This can help your child feel less discomfort when eating, and can help reduce the texture aversion part of the story.
4 – Mineral deficiencies. Picky eaters usually have poor mineral status in their blood and tissues. Iron, zinc, and other minerals all influence appetite. These can be checked with blood tests, but there are also easy to check clinical signs for mineral deficiency states too. See Special Needs Kids Eat Right for a table on detecting mineral imbalances without drawing blood. Restoring good minerals can lift a picky appetite.
If you have an epically picky eater, take heart – there are many nutrition strategies that may crack this nut for you. See either of my books for details.
A friend of mine is a care provider for a disabled adult. She told me a little about this man, who is in his forties, and what kind of care he needs. He is infantile due to a head injury as a boy. She happened to mention, “he has pica” – so, all sorts of non-food things have to be kept out of his reach lest he eat them or chew them. Well, he can’t chew, she explained. He doesn’t have teeth, so all his food is pureed. No teeth at all.
Why no teeth, I asked. Did they all rot? Did he lack access to dental care at some point? Does he have poor immune function? My friend wasn’t sure because the teeth were gone when she began working with this man, but she implied his teeth were removed because of his pica “behavior”.
Somewhere along the way, apparently, it was decided that the best solution to this behavior was to remove all this man’s teeth.
I hope this isn’t true. I’m hoping there is a reasonable explanation for why this individual no longer has teeth – besides ignorance on the part of a physician or dental surgeon somewhere – but my friend confirms that this disabled man’s primary care doctor has told them that pica is purely a behavior.
Not exactly. Pica is a well-known clinical sign of iron deficiency anemia. It also indicates other mineral imbalances or deficiencies – like zinc or magnesium deficiency, or copper or lead toxicity. Mouthing or chewing objects is expected for teething babies, or during the developmental phase when oral exploration is key. Beyond that, persistently eating things that aren’t food – erasers, dirt, sand, rocks, clay, metal objects, plastic, wood, ice – should be regarded as a flag for iron deficiency anemia, zinc deficiency, or mineral imbalances for magnesium, copper, lead, cadmium, or manganese.
Could it be in this day and age that such a fundamental tenet of nutrition was overlooked? Or even more crazy, that it might have cost a developmentally disabled adult who can’t speak for himself every tooth in his head? Was this man’s suffering avoidable?
Possibly. His head injury may have left him with pica that is purely behavioral or developmental in origin. But, it’s simple to screen for mineral imbalances by checking clinical signs and lab tests. My friend tells me she has no idea if anyone ever did this for this man. It can be straightforward to correct pica with the right nutrition measures. When this is done, pica “behavior” can resolve or improve – as can other behaviors that attend mineral deficits or toxicities, like aggression, attention deficits, criminality, or even schizophrenia.
Pica can mean that minerals necessary for learning, growth, behavior modulation, and development are not fully on board, or that they have been displaced by toxic minerals instead. It’s common in people with developmental disabilities, including autism – not a coincidence, in my opinion. Neurotoxic effects of excessive lead, cadmium, copper, or mercury are well known; costs of deficiency for essential minerals in utero or early in life are old news too. Stunting, learning delays, behavior problems, attention deficits, and lower IQ have all been linked to pica and/or mineral imbalances. Pica can also predispose people to greater lead exposure, for two reasons: They may ingest objects containing lead; and, the lower one’s iron status is, the easier it is to absorb more lead, with any exposure.
Before it’s assumed that eating weird stuff is just a behavior – especially in a developmentally or learning disabled person – a doctor should do a full iron study. Blood work should assess ferritin, serum iron, total iron binding capacity (TIBC), hemoglobin, and hematocrit. Your doctor might look at red blood cell shape, size, and number to fully rule out anemia or pre-anemia. Reference ranges for iron parameters are wide. Children should fall solidly in the middle of the ranges for ferritin and serum iron. Teetering at either edge of the range, high or low should prompt more investigation. Marginal iron markers often go hand in hand with inattention, insomnia, picky appetites, or behavior and learning deficits. It is also wise to check serum copper, serum zinc, and ceruloplasmin (a copper transport protein in the blood), to rule out toxic levels of copper. Copper circulating unbound in serum can become neurotoxic, while ceruloplasmin will safely transport this mineral for us. Adequate zinc status can keep copper levels in check.
People with iron deficiency anemia often have pica for pebbles, ice, sand, dirt, clay or metal objects. Those with poor zinc status often uncontrollably chew fabric, clothing, erasers, wood, or pencils, or clench and grind teeth, in sleep or when awake.
One caveat: If iron supplementation is warranted per your provider’s advice, make sure your child is not ill, with a fever, or has active infections, including gut candida infections. Microbes love iron, and will thrive when it is supplemented – which can make your child feel some GI discomfort at the least, or worsen a fever, trigger pain, and worsen behavior outbursts. Iron is also poisonous at the wrong dose, so only use supplements with professional guidance.
To learn more on how kids present when they need iron, zinc, or other minerals, or when they may have toxic mineral loads, see Special Needs Kids Eat Right. Correcting mineral balance is an easy nutrition fix that is worth the effort. Check status of all essential minerals and rule toxic mineral exposures, to really know if pica has a physiological underpinning. Toxic minerals don’t remain in whole blood for long, so a knowledgeable practitioner may want to check packed red blood cell elements to more accurately assess presence of toxic metals. Optimizing minerals means optimizing many pathways in the brain for learning, processing, and emotional regulation – something that will benefit any person with a developmental disability – without pulling all their teeth!
Pediatricians have employed a strategy of late to discourage parents deferring vaccinations. The strategy is this: Fire these parents and children from their practices for balking at the increasingly crowded vaccine schedule. As much as the American Academy of Pediatrics might posture more politely about this when in the spot light, there is no shortage of anecdotes from frustrated, frightened parents who simply want safe vaccinations as much as they want safe cars, safe strollers, safe high chairs, and safe water for their kids to drink. Why are vaccinations different? Why the strong arm tactics? Why do we need to force vaccination on anybody, if it is so assuredly safe and effective?
The reason is that vaccines are not so assuredly safe, and not so effective – and parents are wising up. Our government has quietly spent roughly two billion dollars since 1988 compensating families with the mettle to navigate the system for a claim – that’s just for the one out of three claimants who succeed. And in spite of vaccination rates at 90-100% in most the US, we have regular outbreaks of pertussis, measles, mumps, and chickenpox. Pertussis circulates at high levels now, just as it did prior to vaccination for it. Flu vaccines continue to lose traction as more studies describe how ineffective they are. Investigation into long term effects of using so many vaccines continue to yield chilling findings. With ingredients like formaldehyde, aluminum, mercury, genetically recombined microbes, nut adjuvants, and human and animal tissues, what thinking parent wouldn’t balk?
Here’s a twist: If your pediatrician is so very confident that all vaccinations are safe all the time, and that their benefits truly outweigh risks for your child – not for the population as a whole, not for the CDC, but for your child – then get his signature on this statement below. Let your pediatrician assume the risk, not your child. If the unthinkable happens and your child is injured, you can at least collect from your pediatrician while you wait the average two years to navigate the government’s claim process. Good luck -it took my son’s case nine years just to reach the docket.
Right now, families and children shoulder all the risk. Government health officials, vaccine academics, and many pediatricians disregard this plight, and would sooner abandon you and your child than support your quest for your family’s good health. Because of the 1986 legislation that freed doctors and vaccine manufacturers of any liability, your pediatrician has been kept mostly unaware of what vaccine injuries are, how they look, what life is like for the injured, or who pays for it all. In fact, they are so detached from this issue, there is no treatment offered for a vaccine injury, other than standard emergency care. The ensuing chronic disease (epilepsy, diabetes, allergy, asthma, conduct disorders, autoimmune diseases, mitochondrial disorders, autism) and long term disability become a parent’s burden alone, in terms of coordinating effective treatments to help a child, and paying for them. There is not only no support for these families in our health care system, there is scorn for them, should a parent say aloud that a vaccination caused the child’s injury or condition. If your pediatrician is of a mind to fire you for having legitimate concerns, you might be better off working with a naturopathic doctor, a family nurse practitioner, or a family medicine doctor, who are under less pressure to meet vaccination quotas.
I will wager that no pediatrician would unhesitatingly sign this form. Would your doctor place his or her own life on the line by signing this, rather than your child’s? Doubtful. But the point is that this places the risk where it should be: On the provider and the manufacturer, not on your baby. Our claim system has not served the injured fairly, and it has given physicians a false notion of safety about vaccination. For a printer-friendly version of this statement, click here.
Assumption of Liability for Vaccinations
Vaccinations are a standard of pediatric practice and I, ______________________________________________________________MD, wholeheartedly encourage and support their use to the fullest as recommended by the Centers for Disease Control. Vaccinations also routinely cause injuries and deaths, as acknowledged by the FDA via the Vaccine Adverse Event Reporting System (VAERS), and the US Department of Health and Human Services (DHHS) Vaccine Court system via the National Vaccine Injury Compensation Program (NVICP).
I have fully informed my patient / patient’s caregiver / patient’s parent of VAERS and NVICP. I have given my patient / patient’s caregiver / patient’s parent a VAERS reporting form. We have discussed that VAERS exists to record incidents of vaccine deaths, injuries, and adverse events; that VAERS contains many tens of thousands of such reports for all vaccines; that I as the administering physician am obligated to report these via procedures set by the FDA; that any parent may submit a report to VAERS; that VAERS is a passive system that does not likely capture all adverse events, injuries, and deaths from vaccinations; that NVICP may require claimants to wait years to win compensation; that two thirds of claimants do not succeed; that claimants in NVICP must engage their own legal assistance at their own expense; that claims are not heard by a jury of peers in the regular courts but are reviewed by Special Masters appointed exclusively to the closed and separate court system known as “Vaccine Court”; that this Court was created by the National Vaccine Injury Act of 1986; that as of July 2008, this Court had awarded nearly two billion dollars in compensatory damages to persons injured/maimed/killed by vaccinations.
I have also fully informed my patient/ patient caregiver / patient parent that in case of any injury, adverse reaction, or death sustained as a result of the vaccinations administered at my behest and/or by myself or any of my staff, I hereby make myself personally and fully accountable for any and all costs, losses, and needs associated with said injury, adverse reaction, or death, for the lifetime of the victim, including but not limited to costs of any and all medical care, health care, equipment, rehabilitative occupational/physical/speech or other therapies, attorney’s fees for protection of free and appropriate education (FAPE) as specified under the Individuals with Disabilities Education Act or other civil rights, educational/remedial/tutoring costs, costs of child care, respite care, in home nursing care, long term care, or residential and custodial care, or any costs for any items, care, equipment, travel, loss of income, pain and suffering, or housing associated with this injury, adverse event, or death resulting from vaccination(s) administered by me, by my staff, or at my behest.
I, ________________________________________________ MD, hereby accept all financial, custodial, and medical responsibility and liability, as described above, for any and all short or long term adverse event, reaction, illness, injury, disability or death that may be caused by vaccination(s), which I have administered to my patient ________________________________________________________________ on this day ____________________________
Signature of patient/patient’s parent/patient’s guardian