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From the February 14th, 1994 issue of Smart Drug News. [v2n10]. Copyright (c) 1994, 1996. All rights reserved.
Smart Drugs and Downs Syndrome: Part 1
by Steven Wm. Fowkes and Ward Dean, M.D.
If you listen to scientists who specialize in academic research into Downs syndrome, or to the Downs Syndrome Association, there is basically nothing a parent can do to prevent the profound mental deficits and impaired growth of a Downs child. But if you listen to Dixie Lawrence, a devoted adoptive mother of one Downs child, or to Dr. Jack Warner, a California pediatrician with a ten-year history of treating Downs children, there is plenty that parents can do. In fact, this small group of motivated parents and dedicated practitioners has succeeded in doing what the authorities have decreed to be impossible the normalization of Downs childrens growth rates and mental abilities. Downs children treated with this new smart-nutrient and/or smart-drug treatment program are now being mainstreamed into public schools on a routine basis. Their growth rates are equivalent to those of normal children, and the IQs of those children started on the program early in life are comparable to normal children. One 5-year old Downs girl even has a documented IQ of 140!
The pioneering work on a treatment program for Downs syndrome was begun over fifty years ago by the late Henry Turkel, M.D. Dr. Turkels treatments, which he called his U series medications, consisted of a combination of nutrients and drugs formulated to compensate for some of the metabolic errors which result from the extra 21st chromosome (called trisomy 21) which causes Downs syndrome. Turkels U-series contained vitamins, minerals, fatty acids, digestive enzymes, lipotropic nutrients, an amino acid, and numerous drugs (thyroid hormone, antihistamines, nasal decongestants, and a diuretic). The FDA stopped the interstate distribution of Turkels U-series medications and refused to issue a New Drug Application for them. Nevertheless, U-series medications were determined to be legal for distribution within the state of Michigan, where over 5,000 patients were treated with some success.
Dr. Turkels treatment has now been refined by California pediatrician Jack Warner, M.D. Dr. Warner and his wife Charlene run The Warner House, a center for the study of trisomy disorders, in Fullerton, California. Dr. Warners approach is to combine a nutritional/metabolic therapy with physical therapy and developmental optometry. He says, Warner House is probably the only place that has such a comprehensive approach to treating Downs syndrome. We have a developmental optometrist, and absolutely the worlds best physical therapist. She sits on the floor and works with these children for almost an hour, and we video tape the session so the parents can take the tape home with them.
Dr. Warners program not only significantly counteracts some of the cognitive deficits associated with Downs syndrome, but it prevents and reverses some of the physical and developmental abnormalities characteristic of the condition. Most of the Downs syndrome children being treated with the program are developing near-normal to above-average intelligence, without the chronic illnesses typical of Downs syndrome. Many are competing successfully in public schools, and some of the children fortunate enough to be placed on the program early in life do not have the pronounced physical features typical of untreated Downs children.
Dixie Lawrence is the Director of Adoption Options of Louisiana, an organization that places Downs and other children for adoption. She is also the adopted mother of Madison, a Downs child now 4 years old. After seeing a relatives Downs boy being successfully treated by Dr. Turkels method, Dixie investigated the Turkel and Warner programs and gathered a group of 30 Louisiana families together to bring Dr. Warners team to Baton Rouge. She has since developed an independent protocol combining elements of both programs with both amino acids and smart drugs. Dixies daughter and several of the other familys children have gone on Dixies modified program with spectacular results. A couple of Downs infants have even been treated in utero. In one case, the delivering obstetrician refused to believe that the infant was a Downs syndrome baby until presented with a chromosome analysis.
In the 1950s, Dr. Turkels U-series treatments were met with skepticism and/or hostility by governmental bureaucrats and mainstream researchers who adhered to the then-dominant view that nutrition is at best a trivial influence in such a basic genetic disorder. For every published study that indicates that nutrition can have a positive influence in Downs syndrome, there is at least one that concludes that nutrition is of no benefit. Despite authoritative opinion, parents of Downs children were willing to give Turkels program a try. Although parents regarded the treatments as successful, they complained about the difficulties in complying with the program and some of the side effects of the drugs employed.
Dr. Warners improved program is more convenient than Dr. Turkels U-series medications. Dr. Warner avoids the regular use of drugs, and, unlike Dr. Turkel, he does not automatically prescribe thyroid supplements to all Downs children. Instead, he does a thyroid workup which identifies the majority of Downs children who do need thyroid support, and the specific amount they need.
The basic dietary supplement in Dr. Warners program are called Hap Caps. They do not contain any drugs or thyroid. The prescription of thyroid or other drugs is left to the determination of the attending physician with due consideration for the specific medical needs of each patient.
Hap Caps are formulated to counteract specific metabolic disturbances seen in Downs syndrome. Chief among them are disturbances in the antioxidant enzymes catalase (abnormally low levels) and superoxide dismutase (abnormally high levels) [Groner, et al., 1985; Shah, et al., 1989; Lejeune, et al., 1992]. This disturbance responds positively to the high dosages of dietary antioxidants, like vitamins E, A and C, and the minerals zinc, copper, manganese and selenium.
Another metabolic disturbance is the diminished production of digestive enzymes [Abalan, et al., 1990], which is directly counteracted by the addition of supplemental enzymes to the Hap-Cap formula.
A third disturbance is amino acid regulation. Disturbances in the regulation of cysteine, lysine, methionine, phenylalanine, tyrosine, glutamate, GABA, histidine, tryptophan and cystathionine have been reported [Hyanek, et al., 1970; Airaksinen, 1974; Petre-Quadens and De Lee, 1975; Shaposhnikov, 1979; Pueschel, et al., 1980; Reynolds and Warner, 1988; Lejune, et al., 1992]. Some of these disturbances can be counteracted by supplemental amino acids, like tyrosine and tryptophan. Unfortunately for the Downs children, the FDA has banned the tryptophan that they need. For the last several years, they have had to do without. Other amino acid disturbances can be dealt with by supplemental vitamins, like B-6 and B-12. Disturbances in carbohydrate metabolism have also been reported [Turkel, 1981; Raiti, et al., 1974].
Neuroendocrine disturbances are also a feature of Downs syndrome. The frequency of thyroid abnormalities in Downs children is very high compared to normal children [Napolitano, et al., 1990]. In addition, growth abnormalities have been traced to a deficiency of insulin-like growth factor (IGF) type 1 [Anneren, et al., 1986, 1990]. Both IGF-1 and IGF-2 are stimulated by the action of human growth hormone (hGH), but in Downs children, IGF-1 does not rise in infancy. A major amount of research is now being directed towards the use of hGH in treating Downs syndrome children, with some success [Torrado, et al., 1991]. hGH increases IGF-1 levels and growth rates in Downs syndrome children, but it also increases IGF-2 levels. The use of hGH in the treatment of Downs syndrome is still highly controversial.
Dr. Warners program also emphasizes physical therapy and developmental optometry. It is the combination of metabolic support, thyroid support, and physical and optometric vision therapies that allows Downs children to overcome their developmental learning disabilities and to compete with normal children in sports, school and social interactions. Many of the children on the Warner program have been successfully integrated into public schools, and a number of them have gone on to participate in such sports as baseball and skiing.
Many of these treated Downs children are not easily recognized as such, even by professionals. Three years ago, Dr. Warners group set up their first presentation booth at the National Perinatal Association meeting. They had photos of four of their Downs children on display. We had people coming up to us and saying, Why didnt you put up pictures of Downs syndrome children? says Ardith Meyer, physical therapist for the Warner team. They didnt look like Downs children, she adds. The physical changes in appearance reflect the underlying improvements in the childrens metabolism and development.
Dr. Warner has now treated more than 700 Downs children with his program. He regularly refers his Downs patients for physical therapy and developmental optometry.
Ardith Meyer and Dr. Stephen Meyer are a husband-and-wife team that have been providing physical therapy for Downs children and counseling for their parents. Their center, A Childs Life, is located in Diamond Bar, California. Steve Meyer is a clinical psychologist. He counsels the parents about behavior problems with the children and assists with physical therapy evaluations. Ardith Meyer does the physical therapy and provides the parents with a physical-therapy program for use at home.
Steve Meyer states, Dr. Warners nutritional program has revolutionized my attitude towards Downs syndrome children. Prior to my experiences at the clinic, I had thought that the retardation was a direct factor of the genetic defect. Now I realize that the retardation is a product of an error in metabolism. When we correct this metabolic problem, their mental potential moves into the normal range. We have seen many children move into the above-average range. These children have potential!
Ardith Meyer thinks that one of the biggest problems is that many professionals and parents do not see any potential in Downs infants and children. If parents and therapists dont see that the child has potential, theyll never try anything, states Ardith Meyer. People lock Downs syndrome children into a &@145;mentally-retarded label and fail to realize their strengths, their weaknesses, or their interests. Downs children are like everybody else, they gravitate towards what they enjoy, and if you can make the program interesting and fun, theyll do it. The entire team agrees that Downs syndrome is more properly considered a learning disability than retardation. Ardith Meyer says, Most of the world does not understand that yet.
Without intervention, Downs children have moderate to major developmental impairment with IQs in the 55 range. With intervention, many move into the normal range [85 to 115]. Some remain in the mild developmentally impaired range. The effectiveness of the program depends on the age at which treatment begins. Its clearly, the earlier, the better, states Steve Meyer. I want to see them at eight days of age, states Ardith Meyer. I can start showing the parents what to do that will prevent the waddling gait and difficulty in running when they are in their teens. In the 7 years that she has been working with Downs children on the Warner program, she has yet to see a single child that has not benefited when started in the first few years of life. A few of the older children with autistic tendencies and severe behavioral problems are the only ones that have not benefited from the program.
When I first started with Dr. Warner, I was reluctant to talk about the program with the other pediatricians with whom I worked, Ardith Meyer says. I thought, Im going to wait and see how this is. Now that Ive seen so many children go through the program, Im proud to talk about it.
Dr. Phil Klingsheim is a behavioral and developmental optometrist who treats the vision problems of Downs children. He says, Optometric vision therapy can be a great aid to Downs syndrome individuals in assisting them to reach their full potential academically. Vision therapy involves clinical tests and training procedures that correct neurosensory, neuromotor, and neurophysiological visual dysfunctions. Dr. Klingsheim is impressed with the Warner program. He states, I have observed that Downs syndrome children who have been on the Warner House clinic metabolic program respond better to optometric vision therapy than those not on the program. They seem to be more alert and mentally available to benefit in vision therapy situations.
Although government and academic researchers expect all therapies to be proven in double-blind studies, this would require that half of the children receive a placebo instead of the treatment formula. The withholding of treatment from the placebo group would be ethically untenable for Dr. Warners team, who are now completely convinced that the program is beneficial. Most parents would refuse to take their children off the program, adds Steve Meyer.
Under such situations, researchers resort to the A-B-A-B research model, in which the therapy is purposefully discontinued for an interval, and then restarted. By chance, this has happened for a few children on the Warner program. The child comes to us in condition A, and goes on the program for phase B, explains Steve Meyer, then, for some reason (through a family crisis or economic issue), the child temporarily goes off the program. We know which parents are being faithful to the intervention and which ones arent based on the number of vitamins they order. When the children go off the intervention, we definitely see a decline in their growth, alertness, attentiveness and general health. And when they go back on the Warner program, their growth and learning is restored.
These serendipitous cases fulfill what is called an N-of-one research model, the A-B-A-B pattern, which is a very useful model commonly used in behavior modification research, asserts Steve Meyer. Fortunately for the children, most of the parents come to us with a positive expectancy and, after they experience the initial improvement in the child, they comply with the program. When they arent faithful, theres usually some environmental circumstance that has hindered them, like a divorce or unemployment. In one family, the husband was very reliable with the morning medication and the wife was lax with the afternoon. Thats probably the hardest situation to deal with because of the division within the family.
Ardith Meyer describes one A-B-A-B case of a mother who ran out of Hap Caps. And because she couldnt get to the store, she started giving her Downs son regular milk instead of non-dairy products. When she finally brought him in, he was lethargic and sick. She told me that she didnt think the program was working. I had to say, Wait a minute. You have to keep him on the program. Look what has happened when you took him off of it. She put him back on the program and he got healthy and alert again.
Dixie Lawrence has also experienced a few A-B-A-B instances with her daughter Madison. One of the most graphic was when she ran out of piracetam. Right after Madison first went on piracetam (with phosphatidylcholine and vitamin B-5), she spontaneously potty-trained herself, started speaking in phrases, and developed an active symbolic immagination. Months later, when Dixie ran out of piracetam for a week, within days of ceasing piracetam, Madison broke her potty training and lost her immagination and much of her verbal fluency. Fortunately, when piracetam administration was restored, she regained everything.
After hearing about Madisons achievements, several other families in Louisiana put their Downs children on piracetam, B-5 and phosphatidylcholine with very positive results. Dr. Warner is interested in Dixies results with amino acids and piracetam and is looking into incorporating both into his program. He states, One of the wonderful things that Dixie has come up with is the extra amino acids and proteins. Theres a Dr. Lejeune in Paris that has been working with this [Lejeune J, 1991; Lejeune, et al., 1992], although I dont think that what he is doing is a complete answer. I think all of these approaches have to be put together, maybe including the use of Nootropil [piracetam]. I know that Dr. Schmid has been using piracetam in Germany for years, but I didnt know that it was available [by prescription] in the United States until recently.
At A Childs Life, the children are invited to come to the clinic with their entire family. The physical therapy session is videotaped so the parents can refer to it at home if they have trouble remembering new exercises. Ardith Meyer says, Its my job to help the parents understand what specific needs the children have and give them very specific things to do. A lot of the parents are eager to learn what they can do to help their child develop, and the video tape makes it easy.
The contribution that family relationships make to the growth and development of Downs children is crucial. One Canadian family with a young owns boy and three older siblings came to a Seattle clinic held by Dr. Warners team. Ardith Meyer uses what she calls motor-planning cards, which have instructions to get into a specific body position. She relates, I got down on the floor and into the positions with the boy, and the whole family joined us on the floor and did the motions with us. It was so spontaneous, like this is just what we do for recreation. The family support was awesome, and the boy was picking it up so quickly.
In another family, the mother brought her Downs syndrome daughter in to us at 8 days and every two months since then. The girl is fortunate to have four older brothers who love her dearly and who excel at motivating her to do the exercises. She couldnt have a better situation. She adds, The mother just called me to determine whether it was worth the trouble to drive in to the center through the earthquake-damaged freeway system here in Los Angeles, and one of the brothers told the mother to come in because the daughter had changed and needed a new program.
According to Ardith Meyer, the parents desperately want support from medical professionals. If their doctor doesnt believe that their child can change, they will go find someone who will, even if the advice they get is not appropriate. For decades, Downs children were seen as mentally retarded, not as learning disabled. Because of this attitude among professionals, parents left the mainstream to find someone who would try to help them. When some parents come to me and talk about some other treatment regime, I usually know what they are going to say because the other programs havent changed since the 50s.
But these children do have potential, and I am thrilled to work with them. I show them what to do. Its not me, its them. Im just somebody whos paying attention to them. I have learned a great deal about what their needs are over the years, and Ive also learned why they need to have a physical therapist working with them. With the Downs child, their needs change. Early on, between birth and three years, their postural muscles, muscle tone and motor skills need a lot of attention. Later, a lot of Downs children are hindered by their lack of verbal skills. You can even see it in the toddlers before they walk, says Ardith Meyer. They understand everything you are saying but they cannot verbally respond to you. Because of these communication difficulties, Downs children tend to get pegged lower in school. According to Ardith Meyer, one of the hardest thing for Downs children to learn are perceptual-motor activities, like handwriting, spelling and reading words.
At A Childs Life, Ardith and Steve Meyer try to incorporate strengthening and coordination exercises into play. You cant ask a 9-month-old infant to crawl across the room towards nothing, they wont be motivated, argues Ardith Meyer. You cant ask a ten-year-old to do push-ups. If you want children to do something, you have to incorporate it into a play activity. For example, she has the children load stuff into a wagon and pull it up a hill.
Ardith reports that the treated Downs children are just as willing to go out and play at recess as normal children. The teachers will write to us and say that the treated Downs children are more motivated, states Ardith Meyer. Many teachers have asked the parents, What are you doing differently? The teachers report that the treated children are really paying attention in class, they are very interested in climbing on the gym at recess, and they are interacting with their peers. One mom said that the teacher could tell when she ran out of the Hap Caps, says Ardith Meyer. The child went right back to being lethargic and uninterested. She adds, If the teachers go to the trouble to report these observations, you know the Hap Caps are making a major difference.
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More references will be provided in Part 2.