Diet and vitamin therapy may help people who have metabolic problems and autism symptoms.
Metabolism is the way your body breaks down foods to make energy. Some people with autism have metabolic problems or disorders. They may lack certain proteins or enzymes that are important parts of the metabolism machinery. This article discussed some examples of metabolic syndromes such as phenylketonuria, histidinemia, and adenylosuccinate lyase deficiency. Diet therapy can be very helpful for people with metabolic syndromes, and a specific diet may be tailored to the specific metabolic problem. Vitamin therapy, including pyroxidine (vitamin B6) therapy, may also be helpful for some metabolic disorders.
Autism Therapy: deficiency
definition of deficiency: Having less than normal levels of something.
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- Journal of Autism and Developmental Disorders, by Page, T., published in 2000, summarized Oct 20, 2009
- Neuropediatrics, by Ramaekers, VT, Blau N., Sequeira JM, Nassogne M. - C., and Quadros EV, published in 2008, summarized Jun 30, 2008
Treatment with the B vitamin folate may reverse the symptoms of autism in some children.
The purpose of this study was to see if some children with autism have trouble getting the B vitamin folate into the brain. The children also had other health issues such as marked unrest, slowing of head growth, and low muscle tone. The study had 25 patients with early-onset low functioning autism. All but two of these children had low levels of folate in the fluid of the spinal cord. Folate was not able to get into the brain because the children were making antibodies that stopped the cells from carrying the folate from the blood to the brain.
- Neuropediatrics, by Newmeyer, A., deGrauw T., Clark J., Chuck G., and Salomons G., published in 2007, summarized Jun 6, 2008
Children with autism may be tested for creatine deficiency syndromes to see if creatine is a good treatment option.
People who have trouble using the energy molecule creatine may also have brain problems and communication problems. This study was designed to see if some people with autism have a problem using creatine. The authors looked at the DNA (SLC6A8 gene) of 100 boys with autism. Of this group, one boy had a problem with his creatine gene. The problem did not seem to affect his ability to use creatine, however.
- Journal of Child Neurology, by Manzi, B., Loizzo AL, Giana G., and Curatolo P., published in 2008, summarized May 9, 2008
Energy supplements such as creatine, biotin, and ribose may help some children with autism.
This review article describes different energy problems that can cause the symptoms of autism. These are called inborn errors of metabolism and can include: phenylketonuria, creatine deficiency syndromes, and Smith-Lemli-Opitz Syndrome. The authors believe that these inborn errors of metabolism may account for 5% of the cases of autism. In several of the case studies that were reviewed, a person with autism was found to have a metabolic problem. The authors suggest that people with autism be tested for metabolic problems so that treatments can be tailored to any problems that might exist.
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Yummy Food or Yucky Food
Sep 11, 2008 by AnonymousOne Person's Yummy Food Is Another Person's Yucky Food
Vegetables and protein (fish, poultry, meats, and beans) are the most common food aversions. Some children even reject fruits. The diet becomes extremely restricted to bland, white foods, including sweets, breads, pasta, crackers, pretzels, chips, and macaroni and cheese. These foods are glycemic and raise blood glucose, quickly increasing the demand for insulin production. Zinc is part of the insulin molecule and is depleted, resulting in abnormal taste and taste perception. What develops is an aversion to the flavors in natural foods and increased cravings for highly sweetened foods and those foods containing MSG. (MSG affects the brain's perception of flavor.) The diet becomes more narrow, and nutritional status declines, resulting in more limited food choices. The white diet and vegetable aversion is common among children in Western cultures due to the high exposure to processed and sweet foods. For children with sensory and developmental issues, the aversions are much more pervasive and serious.
There are three potential contributors that lead to the limited appetite, cravings, and food aversions:
The negative effect of this combination can result in faulty messages from the sensory receptors to the brain and dysfunctional interpretation of those messages by the brain. Perception is the "truth" for that person. This is why begging, bribing, and punishing do not and will not work.
The solution is multifaceted. Correction of nutritional deficiencies and elimination of toxic metals are mandatory and involve appropriate therapeutic supplementation based on findings. Foods that cause reactions and/or opiate-like peptides need to be eliminated as healthy, safe foods are introduced and accepted.
How to Go from Yucky to Yummy-The Trojan Horse Technique
For those with texture issues, it is important to adapt the diet to the child's oral and food developmental stage. If textures are a sensory issue, no matter how tasty the food, it will not be consumed. By providing the food in a sensory-pleasing form, the child benefits nutritionally and begins to find mealtime more pleasant and rewarding. Purees are generally helpful. They are better tolerated and can open the door for getting more types of foods into the diet. Many family dishes, including soups, casseroles, or the meat and vegetable main dish, can also be served pureed for the child who has sensory texture issues. In this way, the whole family is enjoying the same meal.
Many of the recipes in this book have been selected to expand nutritional intake, especially using the Trojan Horse Technique-hiding a small amount of the new food (especially vegetables and proteins) within a very well tolerated and acceptable food. Each child differs and, therefore, it is important to identify what foods will work as "carriers" to get the new foods in.
Purees can be made from cooked fresh or frozen vegetables and/or purchased baby foods. If your child is offended by being served baby food, simply keep it well hidden. Create interesting new names for the foods and see that others in the family join in consuming them. The secret to success in introducing these new foods is to combine a small amount with the food the child already likes. For many children, this is the only way new foods can be introduced.
Start with 1 tablespoon (15 g) or less-and then increase when tolerated. Hide the cooked vegetable purees anywhere you can, selecting colors that are not obvious when added to the carrier food. The carrier food needs to be one that the child enjoys. It may even be a food that is being slowly eliminated. Include pureed fruits to improve the taste. Here are some examples of places to hide foods (and even supplements):
The above is an excerpt from the book The Kid-Friendly ADHD & Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet
by Pamela J. Compart, M.D. and Dana Laake, R.D.H., M.S., L.D.N.
Published by Fair Winds Press; November 2006;$24.95US/$32.50CAN; 978-1-59233-223-6
Copyright © 2008 Pamela J. Compart, M.D. and Dana Laake, R.D.H., M.S., L.D.N
Author Bio
Pamela J. Compart, M.D., is a developmental pediatrician in Columbia, Maryland. She combines traditional and complementary medicine approaches to the treatment of ADHD, autism, and other behavioral and developmental disorders. She is also the director of HeartLight Healing Arts, a multidisciplinary integrated holistic health care practice, providing services for children, adults, and families.
Dana Godbout Laake, R.D.H., M.S., L.D.N., is a licensed nutritionist in Kensington, Maryland. Within her practice, Dana Laake Nutrition, she provides preventive and therapeutic medical nutrition services. Her practice includes nutritional evaluation and treatment of the full spectrum of health issues affecting adults and children with special needs.
Carnitine fumarate
Mar 23, 2007 by AnonymousMy son has Prader-Willi Syndrome and I know this is different from autism. I am posting this entry here, though, because his response to carnitine fumarate is really amazing. His OT was really impressed with how it has improved his processing speed. It works by improving fatty acid metabolism. Fatty acid metabolism is an area of active research for autism therapy. There doesn't really seem to be a downside to giving carnitine fumarate (other than diarrhea).
The text below is lifted from www.PWSNotes.org.
So, what is L-carnitine _fumarate_? Most L-carnitine sold by supplement manufacturers is either L-carnitine hydrochloride or L-carnitine _tartrate_ (L-carnitine bound to tartrate). With L-carnitine _fumarate_ (which was developed and patented by Sigma Tau, the maker of Carnitor), the carnitine is bound to fumarate, which is a key substrate in what is called the Kreb's cycle in mitochondria for the production of energy. It is the Kreb's cycle that produces the electrons that are then passed along respiratory transport chain complexes 1-IV for the production of ATP (the basic cellular form of energy). Citrate synthase is the key enzyme involved in the first step of the Kreb's cycle and as such can be rate-limiting for the whole cycle. Fumarate, though, is the substrate for the next to last step in the Krebs cycle and its related enzyme is fumarase.
About 58% of L-carnitine fumarate is L-carnitine, with the rest being fumarate. After it is ingested, the body separates the L-carnitine from the fumarate. Although I can't say for sure at this point, what might be happening is that the L-carnitine part is going off and doing all of the good things it is known for in terms of transporting fatty acids into the mitochondria for burning for energy and whatnot, while the fumarate is entering the Kreb's cycle and boosting its output of electrons that are then transferred to the electron transport chain, resulting in an increase in the production of cellular energy in the form of ATP. If that's what is happening, it could be the extra fumarate is providing a pathway around a metabolic block, possibly in succinate dehydrogenase (SDH), given that SDH is the enzyme that catalyzes the succinate-to-fumarate reaction. If so, it could be that the impairment in respiratory chain transport is not a primary event but is instead a downstream result of reduced substrate availability in the Kreb's cycle. (Interestingly, fumarase deficiency is a very rare autosomal recessive disorder in which the metabolizing of fumarate in the Kreb's cycle is sharply reduced or completely absent and is characterized by massive secretion of fumarate in the urine, encephalopathy, hypotonia and severe developmental delays, all of which (aside from excessive fumarate secretion) are rather reminiscent of another syndrome that we are all too familiar with.)
The Pure Caps capsules contain 586 mg of L-carnitine fumarate, with 340 mg of that being L-carnitine and 246 mg being fumarate. Sulli is only getting 1/4 capsule a day, which works out to about 85 mg of L-carnitine and 60 mg of fumarate for a 16 lb (7.25 kg) baby, which is about 12 mg/kg/day of L-carnitine and 8 mg/kg/day of fumarate. That's a surprisingly small amount of L-carnitine to be providing such dramatic benefit, given that the recommended dosage range for Carnitor is 35-50 mg/kg/day, and provides further support for the hypothesis that the fumarate part could be providing a significant amount of the benefit.
I've spent some time looking into the safety of L-carnitine fumarate and fumarate. L-carnitine fumarate is a relatively new form of carnitine and there aren't many clinical studies involving its use. The studies I found all have to do with Sigma Tau's patented formula for male infertility, ProXeed (yes, among other things, carnitine helps sperm swim better :-). The daily dose of that formula contains 2 g/day of L-carnitine fumarate, 1 g/day of acetyl-l-carnitine, 4 g/day of fructose and an unspecified amount of citric acid (which is also a metabolite in the Kreb's cycle), and in clinical trials seems to have been very well tolerated aside from the usual occasional side effects of large doses of carnitine (i.e., transient nausea and digestive upset, loose stools, etc.).
I have not been able to find any reports of fumarate being used as a supplement. However, fumarate is a component of ferrous fumarate (used globally for iron deficiency anemia in children and adults), as well as a number of drugs, including quetiapine and retroviral inhibitors such as tenofovir. In general it seems to be a safe substance (although it probably shouldn't be used by those with fumarase deficiency).
So what's the bottom line here? It could be that the L-carnitine vs. acetyl-l-carnitine question will become moot and the L-carnitine fumarate form could become the carnitine of choice for those with PWS.
For those who are interested in trying L-carnitine fumarate, the Pure Caps page for it is at http://www.purecaps.com/itemdy00.asp?T1=LCF1, with supplementary information at http://www.purecaps.com/PDF/pi/l_Carnitine_Fumarate.pdf. Jarrow also has (http://www.jarrow.com/product.php?prodid=191), as does Doctor's Best (http://www.drbvitamins.com/nutritionalproducts_details.asp?id=16). Make sure the label specifies that the L-carnitine is the fumarate form and not the more commonly available L-carnitine tartrate. All of the L-carnitine fumarate on the market is made by Sigma Tau and is pharmaceutical grade.
Please note that I am in the process of revising the carnitine and Coenzyme Q10 articles to suggest that, especially for older children, carnitine and/or CoQ10 supplementation be started with very low doses and then very slowly increased in order to give the child (and their parents) plenty of time to adapt to more normal levels of mental and physical energy. After all, older children with PWS have lived with a significant mental and physical energy deficit for years and to them that is "normal." Then CoQ10 or carnitine is started, and all of a sudden the world is a brighter, busier place, they're experiencing all kinds of new perceptions and sensations, and their thinking is zipping along at a significantly faster pace. It's probably much like going from a dim room out into bright sunlight, except way more intense because the increase in energy they're experiencing is a full body and mind experience. So it's not surprising that it could be a somewhat disorienting experience that could lead to emotional, mental and physical reactions that others interpret as irritability. I therefore consider it important that the increase in mental and physical energy provided by CoQ10 and/or carnitine be increased very slowly so as to give the child and their parents plenty of time to adapt, physically, mentally and emotionally, to each step up to a higher level of energy as the dose is slowly increased. It will also probably be helpful if the parents talk with the child ahead of time about what kinds of things they might experience when the CoQ10 or carnitine.
I think the need to proceed very slowly is somewhat less of an issue for infants and toddlers, especially those who are badly delayed in such things as babbling and talking, head control, sitting, and walking, as they have not spent nearly as much time entrained by a significant energy deficit and I think it is important to get them developmentally on track as soon as possible. But as always, it is critical that parents use their intimate knowledge of their child and intuition in determining the approach that will be best for their child.
I also need to note that there is the possibility that the irritability reported in some of those with PWS when CoQ10 supplementation is started could be due to the increased energy unmasking an intrinsic behavioral disturbance that was previously "sedated" by a serious impairment in cellular energy availability. At this point I have no way of determining how much of that irritability could be the result of a some level of understandable disorientation due to a sudden increase in mental and physical energy (as described above) or is due to an unmasking effect. If it does turn out that CoQ10, carnitine, or anything else that improves energy metabolism and mitochondrial function in PWS to more normal levels can unmask a previously sedated behavioral disturbance, I think there are ways that could be dealt with, but that is beyond the scope of this post. I will note once again, though, that my hunch is that at least some of the severe behavioral problems associated with PWS are due to (1) chronic intermittent hypoxia and sleep fragmentation caused by under- or untreated breathing disorders, and/or (2) untreated energy metabolism problems that lead to repeated episodes of hypoglycemia, which is well-known to cause severe irritability and anxiety as well as psychotic-like symptoms and out-of-control rages. I therefore consider it essential that any breathing disorder be aggressively treated and every effort made to ensure stable blood sugar levels throughout the day.
Family
Jan 18, 2007 by AnonymousWe all know that extended families can provide incredible help as the immediate family pulls together to support a child with autism. Sometimes, however, extended families just don't understand the situation and what they can do to help. Here is an example of a letter that one member of our community sent to her extended family to help them to understand her son.
Please click the edit button above and paste in examples of other letters that you have sent to your extended family to help them to understand.
== Letter ==
Dear....
I want to tell you how much we enjoyed seeing you again. Thanksgiving is such a special time of year to gather families together.
It has occurred to me that, although we told you a few years ago about the diagnosis of Aspergers Syndrome, we have not kept you up-to-date with what we can expect from our child as he grows older.
I don’t know if you remember the basics of his diagnosis. Aspergers is a form of autism, which exhibits problem behaviors clustered in three main areas:
Lack of social abilities
In Aspergers, this deficiency is exhibited by a profound lack of empathy and understanding of other people. This leads to a failure to behave appropriately in social situations and an inability to comprehend and consider the needs of other people. The person may not be able to interpret other people’s actions and thus may respond to them
oddly or incorrectly.
Obsessive-compulsive tendencies
Here, the person cannot ignore or distract himself from inner wants and desires. He is likely to get stuck desiring a particular action and meltdown--unable to go further than demanding a fulfillment of this desire. Another contributor to this problem is the person’s sensory sensitivity and difficulty in dealing with changes in his surroundings. This makes him vulnerable to stresses that may not be readily apparent to others, and may lead him to increased reliance on comfort rituals and objects.
Language difficulties
A person with Aspergers appears to be entirely fluent in language. If anything, he talks too much. With his lack of social understanding and obsessive tendencies, the person is apt to talk incessantly and interminably about the esoteric minutiae of a single favorite topic which is the overriding interest in his life. He tends to interrupt often, without the ability to recognize that others need to participate in the conversation or possibly change the subject.
Another topic which is mentioned quite often is Executive Function. Executive functions are that rather vague but very important set of faculties which enable a person to set realistic goals and to coordinate, organize, and complete a project. Often Autistic and Aspergers people have a profound lack of these abilities. They cannot learn or master these skills, and that inability severely impacts their personal and professional life.
I imagine you have seen all these characteristics in my child through the years. What the Aspergers diagnosis tells us is that, unfortunately, most of these difficulties are incurable and will respond to instruction only with a slight change. We have been told that, unfortunately, his condition is not likely to improve substantially in the future.
We have tried, through modifications in his schooling, through counseling and psychiatric advice, and through development of his various talents (computer programming, pipe organ, mathematics) to find an area where he can be productive and develop self-help skills. Unfortunately, he has been unable to succeed at any of these tasks, in spite of his many talents, predominantly because his executive function is so deficient.
So, the trick becomes to give him as many coping skills as we can to smooth his interactions with the outside world. This is, of course, complicated by his lack of realization that there is anything about him which needs changing. (Remember, he has no ability to compare himself accurately with others).
In the opinion of all of the professionals who have worked with him, he will almost certainly never work on a consistent basis, and will always need some form of sheltered environment. Our need to plan for this becomes a major concern. He has been qualified by the Social Security Administration as unemployable, and receives Social Security Disability payments, but, of course, his long-term situation remains a worry.
And there we are in a situation that is always changing and yet, ultimately, remains the same. We would welcome any ideas from you-sometimes a new view is helpful. In the meantime, if you care to delve further into Autism and Aspergers syndrome, the internet is great, though naturally, the material must be tested for validity against other sources, and applied with care, remembering the unique combination of a wide range and variety of disabilities in each person.
This letter is longer than I had planned, but I wanted to share with you some of our knowledge and concerns. We’ve learned all this bit by bit, so perhaps the information is not so overwhelming for us. We find, however, that it is still a lot to take in and accept. Sometimes I feel a bit like Sisyphus in Greek legend who keeps pushing a boulder up a hill, only to have it roll back down to the bottom. Mom sent me a cartoon once. It said: We may not know what’s around the bend in the road, but usually its more road. Sigh.
Aggressive Behavior
Sep 24, 2006 by AnonymousI spent the day at an incredible seminar given by Dr. Ross Greene from Harvard. Dr. Greene is an incredible speaker and he goes on tour occasionally. He has also written a book entitled "Explosive Noncompliant Children and Adolescents: Implementing the Collaborative Problem Solving Approach." And, he has a video of his presentation is available from the web site at http://www.ccps.info.
I feel that he has given me the tools to teach my son techniques to overcome any deficiencies that may contribute to behavioral problems. I really want to share a bit of what I learned because I was so impressed by it. This presentation gave me so much hope, because I feel that I was given an early intervention program for the behavioral issues. Older parents will probably have more perspective to offer here, but I thought this was phenomenal. Some of my notes follow.
His plan involves teaching the children empathy and consensus building and problem solving as opposed to training them to behave.
He believes that children who have outbursts are "Delayed in the development of the skills of flexibility/adaptability and frustration tolerance, or have significant difficulty applying these skills where they are most needed."
Therefore, the logical intervention is to "Teach the skills of flexibility and frustration tolerance and reduce the likelihood of explosive outbursts, while maintaining adults as authority figures."
He argues that children/adults who have these problems have a deficiency in one or more of the following pathways: executive skills, language processing skills, emotion regulation skills, cognitive flexibility skills, and social skills.
For example, one of the executive skills is separation of affect which means separating emotions form thinking. The goal of intervention would be to teach the child how to think clearly in the midst of frustration. (As opposed to punishing the child for not thinking clearly in the midst of frustration).
One of the language processing skills is identifying and articulating problems and so you would teach the child how to find words to articulate moods and needs and concerns.
Cognitive flexibility (idea gets stuck in head and won't change) is another deficiency that can be assessed and trained.
He argues that explosive outbursts are highly predictable and that predicting them requires identifying the child's processing limits as well as the triggers.
Compliance is a cognitive skill that not all children are born having.
Parenting these children (and all children) should involve solving the problem together - as opposed to letting the adult dictate the solution or letting the child dictate the solution.
He believes that many outbursts can be avoided by successfully thinking through solutions with the child before the trigger presents itself. For example, if you know that your child freaks out when he has to brush his teeth, you work through a plan with him in advance so that he does not freak out.
Key steps are: 1) empathy, 2) define the problem, 3) invitation to create a solution.
Above all, though, parents must ask themselves if they truly have a concern. If the parent doesn't have a concern to set on the table then there is no need to say no to the child.
If your child has trouble shifting gears, you could help him to identify when a shift is going to be required, anticipate the shift, and do what is necessary to achieve the shift so that he is not always surprised.
Dr. Greene argues that explosive kids are often bad using past problems to resolve similar problems. If the problem is not precisely identical to a problem that they have seen before, they can't apply it. So, you have to teach them how to do cross apply situations. It may take 30 or 40 times, but he believes that you can teach them how to access past solutions.
Or, if the child has cognitive distortions (I am stupid) you can provide disconfirming evidence to refute the distorted cognition.
His philosophy is that "Children do well if they can"
One of his messages is that it is important to teach your child to think and to do it at age 2-3, so that they don't get stuck in 2-3 year old behavioral issues.
"If you teach a child that someone always has to win and someone always has to lose, when does s/he learn the important skills of solving problems in a mutually satisfactory manner (win/win)?"
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