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From the July 18th, 1994 issue of Smart Drug News [v3n4]. Copyright (c) 1994, 1996. All rights reserved.
Smart Drugs and Downs Syndrome
An Interview with Dixie Lawrence
by Steven Wm. Fowkes
Can you give our readers a brief and simple explanation of Downs syndrome?
Downs syndrome results from complete or partial duplication of chromosome 21, one of the smallest of the human chromosomes. Chromosome 21 contains, among other things, the genetic blueprint for various proteins, enzymes, and other metabolic substances. Normally, a human being has 46 chromosomes, but people with Downs syndrome have 47. The duplicated 21st chromosome, called trisomy 21, causes a gene overdose that leads to an excess of some gene products and numerous metabolic imbalances.
I could see some of the physical imbalances in my own child. Downs syndrome children, for instance, have dry skin, slow-growing sparse hair, low muscle tone, slow growth and very loose ligaments. All of these symptoms are complications of amino acid, mineral and vitamin deficiencies.
I want to emphasize the importance of amino acids. A French scientist, Dr. LeJeune, showed almost identical amino acid deficiencies in 79 Downs syndrome individuals. Serine levels are particularly deficient. Some people might not think that low serine levels are a serious problem, but Dr. Evan Jones of North Carolina University, an expert in the field of amino acids, has advised us that serine deficiency could indeed contribute significantly to many of the problems associated with Downs syndrome, including mental retardation.
One of the most significant of the metabolic imbalances is probably the overproduction of superoxide dismutase (SOD), an antioxidant enzyme which is encoded on the lower arm of chromosome 21. The increased levels of SOD are associated with decreased catalase levels, increased lipid peroxidation, decreased immune response, and possibly increased risks of leukemia.
There are many different genetic forms of Downs syndrome. Dont some just have pieces of chromosome 21 duplicated.
Right. Theres translocation which occurs when part or all of chromosome 21 is stuck to the end of another chromosome usually chromosome 14. This form of Downs syndrome is inherited. The most common form is non-disjunction, where the genetic material doesnt separate properly during cell division.
The duplicated chromosomes are supposed to separate, so that one copy goes to each side of the newly divided cell. Without separation...
...both copies of chromosome 21 go to one side. Then you have 45 chromosomes in one cell and 47 in the other. The 45-chromosome cell tends to die, and the 47-chromosome cell continues to reproduce. Non-disjunction probably represents about 85-95% of all cases of Downs syndrome.
When non-disjunction happens after the first cell division, you have mosaicism. Mosaics have two cell lines, one with the normal 46 chromosomes and one with 47. Depending on the percentage of normal cells, mosaics may be significantly less affected than non-mosaics.
How old was Madison when you adopted her?
She was 12 weeks old. She had skin rashes, constipation and a history of frequent respiratory and ear infections. It seemed apparent that she had certain deficiencies which were affecting her immune response.
I liken Downs syndrome to a cake recipe. If you mix cake batter with too much of some ingredients, itll bake into something like a cake, but it wont be what the recipe intended. With Downs syndrome, there are too many ingredients in the human recipe. Unlike trisomy 18 and trisomy 13 which alter the recipe so much that the fetus dies or the child lives only a short time, the trisomy 21 recipe is correctable. We can add the short ingredients to balance out the extra ingredients. In other words, we use nutrition to compensate for the genetic overdose.
I do not believe in vitamin-only therapy because it only corrects part of the problem. I do believe that it helps, but its like putting a band-aid over a surgical incision.
Even Dr. Warner uses tyrosine and tryptophan or at least he used to use tryptophan before the FDA pulled the plug on it.
Research studies do suggest that Downs children are tryptophan deficient, and therefore serotonin deficient.
I wonder if theyre melatonin deficient?
Probably. The levels of serine seem to be the lowest. When you are working with an amino acid profile, it is the lowest one determines what you have to work with.
Right. The most deficient amino acid limits the rate of protein synthesis, and that ultimately limits growth.
When we supplement the deficient amino acids, we can alter their growth rates. We cant just supplement serine, or tyrosine, or tryptophan, weve got to supplement all of the amino acids that they need, including the ones that may show up in abundance. Now that might not make much sense, but you can think of the serum as a sludge pool for amino acids. What counts are the amino acids which get inside the cells.
And vitamins and minerals are the essential cofactors for protein synthesis.
Were beginning more and more to recognize the importance of coenzyme Q10 in not just immune function, but basic brain function too.
You started investigating Downs syndrome in 1990 after you adopted Madison?
Yes, when she was a small baby.
Was doctor Turkel still alive then?
Turkel had left Michigan and was living in Israel then. I didnt find him until 1991. I first heard about Turkel because of a Louisiana woman whose 9-year-old son Zack kept popping up on the honor roll. I heard that Zack had Downs syndrome because he was my ex-husbands nephew. But after the divorce, I lost track of the family. Years later, I was more than surprised to see his name on the honor roll. He wasnt on any Special Ed honor roll, it was the honor roll. Zacks mother had started the local Downs syndrome group here, so I called her and congratulated her on how lucky she was. I had assumed that Zack was a true Downs mosaic in which some percentage of body cells are normal, because of his exceptional mental function. I was wrong. He was on Dr. Turkels program. Because of that, Zack is very intelligent. For example, can you spell elevator backwards?
No, I cant. Not quickly.
He can, just as quickly backwards as forwards. Immediately. Any word that he knows. Now were talking about a child with Downs syndrome, a child whos never missed the honor roll.
When did he start the Turkel program?
At nine months of age.
So hes been on Turkels program for over ten years?
Actually, he was on Turkels program for three years, until Turkel quit doing his program. Fortunately, his grandmother owned a health food store. His family duplicated the Turkel program as much as they could and hes been on it ever since. Because of his familys dedication, Zack will never need to be dependent on anyone. He is one of the top students in his school. He is essentially a normal kid. He has very few Downs syndrome features. You can tell if you look closely at him and you know what to look for. Hes cute, very attractive, and smart as a whip.
Does he have any of the classic problems like with verbal communication, or did he have any problems as he was developing?
He has extremely good speech, but he stutters if he gets flustered or tries to talk too fast. The speech centers have not been affected by Turkels program as well as they could have been. Thats where piracetam comes in. Dr. Puchels work on the neurological aspects of Downs syndrome has shown that areas of the brain do not connect properly, and that the transmission of information between the two hemispheres of the brain is garbled. The combination of piracetam and choline seems to address that. Just having a speech defect does not make one mentally retarded.
No. It may make people think that youre mentally retarded.
Absolutely. And having Downs syndrome facial features does not make you mentally retarded. It certainly doesnt help you.
I found Turkel in Jerusalem in the middle of a bombing raid. I could hear the explosions in the background as I was talking to him. He gave me the name of a Canadian biochemist, Kent McCleod, and he gave me the name of Dr. Warner. I called Warner and asked if he was doing the Turkel formula. He said he was doing something similar, and it is similar.
Turkels program contained drugs that were frightening to me. Turkel used a powerful diuretic, and a Ritalin-like stimulant...
Right, which to me was more of an inhibitor and I didnt want that. I think he was working with older children who had a lot of acting-out and attention-deficit problems that he was addressing. Its not so in a baby.
But if you treat the baby with the physical therapy and optometric therapy like Warners team does...
Yes. His is a whole-body approach. I like it. I like Warner very much because hes open minded to alternative approaches. He understood that I had looked at what he was doing and thought I needed to do more for Madison. His program is far superior to anything else offered to Downs children by the medical profession, but I couldnt ignore the amino acid problems that I saw in Madison.
In a lot of ways his program is very conservative.
Its very conservative, but you have to understand that hes working within the system. He actually met with the FDA before he started his program.
That must have put some serious limits on what he could put in his formula. Dr. Lord Lee-Benner was impressed with Dr. Warners results, but he was particularly concerned about the low amount of zinc in Hap Caps.
Yes, very low zinc. When I put Madison on the Warner program, I added an additional 15 mg zinc and 25 mg B-6 per day.
Dr. Lee-Benner brought to my attention a study that was done in Japan where they studied zincs effect on not Downs kids but low-growth kids. On zinc, their growth normalized and their insulin-like growth factor type-1 (IGF-1) normalized. Its the IGF-1 that is deficient in Downs syndrome. They produce normal amounts of IGF-2 in infancy, but never seems to make the transition to IGF-1 in childhood. In this study, zinc acted specifically on IGF1, without altering IGF-2 or growth hormone itself.
Madisons diet is not necessarily restricted to anything in particular. I feed her a lot of raw food, raw carrots and raw vegetables, because of the digestive enzymes they contain. I avoid giving her raw legumes and nuts because they have enzyme inhibitors. Downs kids definitely seem to be deficient in digestive enzymes.
Do you also supplement her with digestive enzymes?
I do, but digestive supplements are so bitter that its hard to get them down her.
So shes not old enough to take capsules and pills.
No. I wouldnt even try. I shake her supplements up in her juice. One thing that we have discovered is that apple pectin is a really good flavor-masking agent.
What supplements do you favor for Madison?
There are two I would use for Madison. One is an over-the-counter product made by TwinLab called MaxiLife plus CoQ10, which we have used with piracetam, choline extra C, B-5, and a liquid amino-acid formula. The second is a complete product that I helped formulate called MSB Plus, available through a Canadian pharmacy.
Whats her daily regimen?
She gets a teaspoon of the MSB Plus formula and 800 mg piracetam in the morning in her juice. When we were using the MaxiLife/liquid amino method, she got one MaxiLife in the morning, a tsp of liquid amino acids, extra vitamin C and B5 plus phosphatidylcholine and piracetam. I mixed it in apple juice, with apple pectin as a flavor-masking agent.
Do you have a growth chart of her so far?
Yes. Shes only in the tenth percentile, but shes supposed to be small both of her birth parents were tiny. Shes not a big kid, but shes a whole lot bigger than she would have been.
How many other families in your area have put their Downs kids on a nutritional program like Madisons?
About 50. Zack was the first, and Madison was second. It took me two years to do the research, not only because it was hard to locate Turkel, but because I was concerned about some aspects of his program the reliance on diuretics and nasal sprays, and the one-formula-fits-all approach.
Just before her second birthday, Madison was diagnosed with nystagmus [constantly twitching eye movements] and moderate to severe near-sightedness by two of the best pediatric ophthalmologists at Childrens Hospital. Both specialists said she needed surgery to correct her vision, but I said no. I wanted to try the program first.
This was about two months before you started the program?
Yes. The first thing I did was to pump her full of brewers yeast. I started using brewers yeast in her cereal for the B-vitamins, antioxidants, and amino acids she needed. And I started feeding her yogurt every single day.
Yogurt? Doesnt that cause a mucous problem?
No, not if you wait until the expiration date on the container. The yogurt seems to coat the intestines and help with digestion. I also added an extra capsule of milk-free acidophilus culture, avoided any kind of rice cereals, and absolutely avoided uncultured cows milk. Weve kept her healthy. Of course she was also getting vitamin C three times a day and a multi-vitamin.
Both eye doctors said that her eyes were structurally normal, so I figured that the problem must be neurological.
So were you doing any physical training exercises with her?
At that point, yes. But when we started the treatment program at two years, I pulled her out of absolutely everything and started treating her like a normal child. At 22 months of age, even going to physical therapy once a week, she was still nowhere near walking. She could barely crawl. At 26 months, she went on Dr. Warners program.
I got a group of about 30 families together to bring Dr. Warner from California to Louisiana. I told the parents, I dont know all of what this man has to offer, but if we all pitch in, we can fly him and his team here. So we did.
When I got home and read his labels, I thought, Hes using taurine and tyrosine, but hes not using other amino acids to maintain a balance. So I did. I balanced the amino acids, and added more vitamin C, more zinc and more vitamin B6.
So you were using his basic Hap Cap formula, and adding these other things?
Yes. But I had to add to it too much, and it rapidly became a pain in the rear. Three weeks into this modified Warner program, Madison stood up and walked very well I might add.
Her muscles started changing immediately after starting the program. Within two weeks, I could see a calf muscle that she never had before. Within three to four weeks, the calf muscle was obvious. Her feel changed. Holding her was no longer like holding a rag doll.
At 24 months, she couldnt climb one step; six weeks after she went on the modified Warner program, she could climb a flight of stairs, up and down. My mother-in-law asked, Whats happened with Madison? Its like a light bulb went off in her head. My pediatrician brother-in-law doesnt think Im crazy anymore. Last Christmas he gave her a 24-piece puzzle designed for six year olds. Although she wasnt even four yet, Madison opened the package, took out the puzzle, popped the pieces out and put it back together in about five seconds, right in front of him. His mouth dropped. Madison is still speech-delayed, but that is the only significant delay still remaining.
Well, thats common in Downs syndrome children.
She had almost no speech except maybe two or three words until we started her on the piracetam.
OK, to continue with the program...
The modified Warner program was fine, but I kept having to crush the supplements to add it to her food and drinks. Then I found the MaxiLife formula mentioned in a book on Alzheimers disease. After calling TwinLab in New York, I had my friend at the local health food store stock it for me. I changed to MaxiLife because of the Coenzyme Q10. There seems to be a CoQ10 deficiency involved, and CoQ10 deficiency has been linked to lowered immune response.
Thats probably why they have cardiomyopathy more often than the average infant.
I think so. Madison was lucky to have been born without a heart defect.
The greatest change in her facial features happened during the first three months on the program. Madison went from a flat face, typical of Downs syndrome, to almost normal. It was such a dramatic change that some people who had not seen her in a while did not recognize her. Some looked at her and said, What did you do?
There was always a cognitive level in Madison from eight months forward that was recognizable, but it was like she was locked inside and couldnt get out. As her mother, I could see it, but a stranger probably wouldnt. She was eight months old before I realized that she really had potential. When I would change her diaper, she would puff her belly up for me to rub her tummy. Then one particular time, I was busy with an especially dirty diaper, she poked her tummy up and I said, Rub your own tummy. And she did! Later I felt guilty. When I first adopted Madison, I thoroughly expected to raise a seriously handicapped child who would never leave home as an adult. I had done what lot of parents do, to become complacent in comfortable ignorance.
Yes, but maybe we can change that.
I now deeply regret not starting Madison on a metabolic formula in early infancy. Those children started very early in life show few developmental delays, if any, and even fewer physical signs of Downs syndrome. For instance, one of our children was recently highlighted on a news broadcast that aired in California. She was chosen, quite frankly, because she is nothing like a child with Downs syndrome. I know she has Downs because we placed her for adoption. But because she started on the metabolic therapy and piracetam in early infancy, almost no evidence of the Downs phenotype remains. You would have to see her genetic analysis to know she had Downs syndrome.
Despite all the scientific evidence to support what we are doing, the proof is in the pudding. In most ways, Madison functions as a normal four year old. She can operate the television and VCR remote control, she uses the track ball to play simple computer games, she speaks in complete sentences, and she potty trained herself at 33 months of age. Basically, shes a normal kid. Her head circumference, by Downs standards, is quite impressive. A recent study stated that average head circumference for 17 year old Downs syndrome females is 49 to 50 cm. Madisons head circumference is 48.75 cm at 4 years of age. Most Downs children are noticeably microcephalic. Madison, clearly, is not. Neither are any of the other kids who start the metabolic therapy early in life.
What else have you noticed about the children on the piracetam/nutrition program?
Hair growth. Madisons hair grew 10 inches in one year. Ten inches! Madisons hair is now so long she sits on it. This is in comparison to Downs syndrome children who dont even have any hair, or slow-growing straight hair, never curly. Madisons hangs straight to about her waist and then the ends form little ringlets like Shirley Temple curls.
Untreated Downs syndrome children have an under-development of the nasal bridge and the sinuses, and an under-development of the mandible and maxilla [lower and upper jaw] which really interferes with dentition. They have a flattened upper lip because of under-development of the underlying bone. Before treatment, Madison had all these features. After treatment, her nasal bridge developed, her jaw (mandible and maxilla grew to normal, and her crossed teeth straightened out. She didnt have to have braces; she simply had jaw development. Her dentition is now normal. Before treatment, she was missing three teeth buds. The dentist said those teeth would never come in. After treatment, they all did.
Her vision also improved. At 34 months, her eye exam was normal. No nystagmus, no strabismus, no nearsightedness. Perfect vision, without glasses. Glasses had been prescribed for her when she was younger, but she would never wear them.
Normalization of her facial features was extremely quick. In about six months, her appearance changed from a very flat-faced, weak-eyed, clearly handicapped Downs syndrome child to a child who did not look handicapped. I dont care what any of those experts say about this treatment not working.
To give you another example, I used to place six Downs syndrome babies a month. Now Im lucky to place six a year. When the parents see Madison, they pick their kid up and go home. They see that there is something that they can do. Theyre not scared and lost anymore.
Thats the big issue, not knowing what to do, and feeling helpless about the situation. So how did you find out about piracetam?
Initially, I was looking for something which would facilitate communication between the two hemispheres of the brain. I found one German reference to piracetam, and ultimately, I read about it in Ross Peltons book, Mind Food and Smart Pills. I then started looking for a source. A good friend of mine was being treated for diabetes in Mexico, so I asked him to scout out the pharmacies for me. He found a good one that I have been working with ever since.
Before I gave the piracetam to Madison, I took it myself. I started with an attack dose of 4800 mg. For a month, I recorded my every reaction in a log book. Then, after consulting with a local doctor who is very supportive of what we are doing, I started Madison on 400 mg a day.
How old was she then?
That was about one year ago. She was around 33 months old. Until that point, she was in diapers. Although we had tried to potty-train her, she didnt seemed to have any understanding of what we wanted her to do. Potty training begins when a child recognizes that urine is something which comes from their own body. Madison just didnt understand this, so we didnt push the potty training. She was doing well in other areas, but her higher intellectual and verbal skills were still quite delayed. At this time, she was on the metabolic program including amino acids, but not yet on piracetam.
What happened after you put her on piracetam?
Five days after starting piracetam with choline and B-5, Madison potty trained herself. She took her own diaper off, went to the bathroom, took the potty seat apart, put the lid on the big potty seat, turned the base of the potty seat upside down as a stool, climbed up on the toilet by herself and pee-peed in the potty. She was ignoring us, but my husband and I were watching her while she did all this. He said, If she does that again, Ill be impressed. About 45 minutes later she headed back to the bathroom and did the same thing again. Shes been completely potty trained ever since. She finally understood.
She must have learned the process from your earlier instructions...
Im sure she watched the other kids in her nursery school use the potty. Children with Downs syndrome seem to understand far more than they can verbalize and physically express.
Did you see her verbal abilities change?
About the fifth or sixth day she started saying things. She had a few words, she could say cookie and outside, then she started saying, Wanna go outside. And I asked, You wanna do what? She repeated, Wanna go outside.
And how much piracetam were you giving her?
At that time I was giving her a low dosage of 800 mg a day, split in two 400 mg doses. For a while I reduced it to 200 mg twice a day to see if it had any effect. It did not. She did not revert. Now shes back up to 800 mg a day of the liquid piracetam.
What else have you noticed?
Shes doing some amazing things. She wasnt just potty trained, she went to her dresser, took out her underwear, put both feet through the holes, and pulled them up and on. This is highly unusual for a three-year-old Downs child.
The most amazing thing she did was to develop an imagination, an unheard of development in Downs syndrome children of that age. She likes to play ball. She overhand pitches, and shes got a strong and accurate arm. She can knock your head off clear across the room. About a week after starting piracetam, she came in and said, I wanna play roll ball. We looked all over and couldnt find the little basketball that she usually plays with, so she sat down on the floor and she told me, Sit down. I sat down and she pretended to pick up her roll ball and throw it at me. I looked at her like she was nuts, but I pretended to catch it and threw it back to her. She pretended that it hit her in the head. She ducked her head and she goes, Oh, boo-boo. This might just be cute for another child, but for a Downs syndrome child were talking about an extremely important development.
Her imagination has continued to grow. She now flies with Peter Pan whenever she sees the puppets on the screen, and sometimes when its not on.
Wonderful! Thank you for this very interesting interview. Im sure well have you back for more in a future issue.