Cyber Monday Sale!

The publishing company which our book, Down Syndrome: What You CAN Do, is published through is having a Cyber Monday Sale.

Use this coupon code at checkout: CYBERMONDAY305 and receive 30% off.

You can go to LuLu to order the book at this link: http://www.lulu.com/spotlight/gotdownsyndrome

If you order the printed book at $22.73, take 30% off, you can get the book for $15! That's quite a deal on a 589 page book :).




Tweet

Winner of the Giveaway!

Thanks for all those who entered the book giveaway. Using Random.org, the winner of the giveaway is #5:

And that is Julie from It's Mina's World, We Just Live In It!

Congratulations Julie!! Send me an email at qf {at} gotdownsyndrome {dot} net (remove spaces) with your address and the book will be mailed out to you.




Tweet

31 for 21: Giveaway!!

All other posts are below this giveaway. Scroll down to see the other posts on the blog!

As many of my readers probably know, a couple years ago my mom and I published a book called Down Syndrome: What You CAN Do. We put together articles and stories from doctors, therapists, professionals, parents, families, etc to share that you can do for people with Down Syndrome.

So, I thought I would do a giveaway of the book on the blog! This giveaway will end November 1st at 11:59pm. A random winner will be drawn on November 2nd using random.org and the winner will be notified via the blog and email!

To enter the giveaway:

Simply leave a comment here. For additional entries, you can do one or all of the following options, just be sure to mention it in your comment here or leave additional comments for each additional entry.

1. Tweet about the giveaway (link back to this post or to the blog!)
2.Share about the giveaway on Facebook
3. Blog about the giveaway on your blog

Have fun and we'll see who the winner is!

To give a little more detailed info on it:

Down Syndrome: What You CAN Do was written to give parents and families hope through positive and truthful information about Down syndrome.

While this book is an invaluable resource for families when they first hear their child has or will be born with Down syndrome, it is also very helpful for families who are already on the journey of raising a child with Down syndrome.

This book is an excellent reference for doctors and other professionals to assist when giving a diagnosis, both prenatally and postnatally.Down Syndrome: What You CAN Do was written to give parents and families hope through positive and truthful information about Down syndrome.

While this book is an invaluable resource for families when they first hear their child has or will be born with Down syndrome, it is also very helpful for families who are already on the journey of raising a child with Down syndrome.

This book is an excellent reference for doctors and other professionals to assist when giving a diagnosis, both prenatally and postnatally.

Down Syndrome: What You CAN Do covers many topics, beginning with a chapter which deals with the acceptance and capability of children with DS. Other chapters include how to breastfeed a child with Down syndrome, nutritional intervention, and more. Important medical information including heart defects, thyroid concerns, and gastrointestinal problems are discussed. Some of the other chapters detail what can be done through early intervention such as oral motor speech therapy, physical therapy and other therapies. Adoption stories and adoption resources for families are provided. Many stories from parents and siblings are featured to give support to those who read this book. A long list of support groups & recommended books are also included.

The forward of the book is written by self advocate, Karen Gaffney and the introduction is written by Dr. Lawrence Leichtman.

Some Reviews:

“The book is excellent and filled with a lot of great resources.” Donald Michael, MD, PC

"When I received the book, after glancing through it, I plunked it into my husband's lap and said, ‘That's all the things I have been reading about and researching these past 5 years.’ Now it's all in one place, with research references to back everything up" Gail Udell, Co-founder/Co-President Emerald Family Down Syndrome Network

A 15 page preview of the book can be seen by clicking here. Click on "Preview" below the picture of the book.

The book can be ordered from the following places:

LuLu
*$22.73 + shipping for a hard copy of the book.
$5.00 for an e-Book version of the book.

International Nutrition
*$27.95 + shipping for a hard copy of the book.

The book can also be ordered through Amazon, Barnes & Noble and many other online book stores. You should be able to look the ISBN up at any bookstore and have it ordered.



Tweet

31 for 21: History of Targeted Nutritional Intervetion

I've decided to start to go over Dr. Henry Turkel's book which he wrote in the 1980's. Dr. Turkel was one of the first doctors to use nutritional supplementation in people with DS. The first post covering his book is scheduled to post tomorrow. But, before that, I thought it would be helpful to share an article which is in our book that goes over the history of Targeted Nutritional Intervention (TNI).

The History of Targeted Nutritional Intervention
By Qadoshyah Fish

Henry Turkel

The idea of giving vitamin supplements to individuals with Down syndrome has been around for many years.  It started in the 1950’s with Dr. Henry Turkel’s work¹. The effects and all that the extra chromosome did were not yet known at that time.  Therefore, Dr. Turkel’s work was, in a way, working in the dark.  It was not until 1974 that researchers began to realize what genes were on the 21st chromosome. It was not until a few years later that it was discovered some of these genes were actually being over-expressed in patients with Down syndrome and therefore causing some or all of the problems associated with Down syndrome. This would not be fully realized until years later when the Human Genome Project was done in the 1990’s.  In the 1970’s and years prior, it was thought that the genes from the extra chromosome were “turned-off” and played no role once the person was born, as can be seen in this quote from Dr. Turkel’s book,

The medical consensus that there were no metabolic imbalances in Down syndrome was so deeply entrenched that as recently as 1977, some medical students were still being taught that the extra genes encode structural defects before birth and then “turn off” (Expert’s testimony in Superior Court, Los Angeles, California #C 88260). (Medical Treatment of Down Syndrome and Genetic Diseases by Henry Turkel, M.A., M.D., Ilse Nusbaum, M.A. Copyright 1985. Page 172)

Dr. Turkel’s supplement was called the “U Series.”  It was a protocol with a variety of vitamins, minerals, drugs and many other nutrients to be taken throughout the day. Because Dr. Turkel’s work was without all the medical research that we have today, the doses of vitamins and nutrients that were given patients were very large “mega doses” of nutrients. His protocol was conceived after the father of a boy with Down syndrome approached Dr. Turkel in 1940 about a “possible treatment for his son.” Dr. Turkel’s “U Series” helped this child and therefore word spread about the “U Series.” In the 1950’s Dr. Turkel restricted his practice, with a few exceptions, to only patients with Down syndrome and other forms of mental retardation.  Dr. Turkel saw many improvements in the patients in which he used the “U Series.”

In 1959, Dr. Turkel applied for a “New Drug Approval” for his “U Series” from the Food and Drug Administration, but they denied Dr. Turkel’s appeal for approval. It was denied because the FDA did not consider the newly discovered implications of the extra genes on the extra chromosome 21 and therefore “concluded that since the ‘U’ Series could not remove the chromosome, it could not help the patients.” (ibid, page 209).  The FDA stopped Dr. Turkel from interstate distributing of the “U Series”, but he was legally able to sell the “U Series” within the state of Michigan.

Dr. Jerome Lejeune, who discovered the cause of Down syndrome, Trisomy 21, was also using vitamin and nutritional supplements with his patients with Down syndrome during the 1960’s. He was not using the “U Series,” but he was using some of the same vitamins and nutrients that were in the “U Series.”

Jack Warner

Dr. Jack Warner started his private practice in the early 1960’s². A few years after beginning his practice, Dr. Warner saw his first patient with Down syndrome.  It was then that Dr. Warner started extensively researching Down syndrome.  In 1984 his research led him to meeting Dr. Turkel. Dr. Warner was  impressed with the good results that he saw with the “U Series” that he started referring many of his patients to Dr. Turkel.  After constant research and continuing to see the beneficial effects from the “U Series” it led Dr. Warner to several other doctors and biochemists from the Linus Pauling Institute. This gave new knowledge and showed the increased benefits and effectiveness of certain nutrients from new research which led Dr. Warner to design the High Achievement Potential Capsules (HAP Caps) to be used with patients with Down syndrome.

HAP Caps were formulated in an FDA laboratory and received FDA approval in 1986. Unfortunately Dr. Warner’s research and HAP Caps have “fallen by the wayside” since his death in 2004.

Nutrichem’s MSB Plus

In 1982 Kent Macleod met the mother of a child that was severely brain damaged and had seizures³. He was able to treat this child with certain vitamins and it helped him tremendously, stopping his seizures. This mother began to research how nutritional supplements may benefit her son and found the work of Dr. Henry Turkel.  She asked Macleod to look at the research and findings of Dr. Turkel. She set a meeting up with Macleod and some mothers of children with Down syndrome to discuss the work and claim of Dr. Turkel. At this meeting, Macleod told the parents that if he were to consider this treatment, he would change Dr. Turkel’s formula.  Therefore, Macleod started to develop the first MSB Plus formula. Macleod’s work with children with Down syndrome continued to grow slowly over the years by word of mouth as parents told other parents the health benefits.

In the early 1990’s, Macleod was contacted by a mother, Dixie Lawrence, who’s adopted daughter had Down syndrome. Dixie asked Macleod if he would consider customizing the MSB formula based on her daughter’s blood work results.  At this time there was research and work being done in France by Dr. Marie Peeters-Ney and Dr. Jerome Lejeune on amino acid deficiencies being linked to certain genes on the 21st chromosome. After hearing the positive reports by parents who had been giving their children MSB Plus for the past 10 years and seeing the research done in France, Macleod was convinced to work with Dixie on a customized formula for her daughter.  Interest in Nutrichem’s MSB Plus grew tremendously after Dixie aired on the Day One program in 1995.

Today Nutrichem still provides their MSB Plus formula to thousands of families all over the world. 

International Nutrition’s Nutrivene-D

Nutrivene-D was originally developed by Dixie Lawrence Tafoya for her daughter with Down syndrome in the early 1990’s⁴. Dixie learned of Dr. Turkel “U Series” and was able to find Dr. Turkel in Israel where he had retired.  Dr. Turkel informed Dixie that he was not seeing patients anymore and that he had left his “U Series” to a pediatrician, Dr. Jack Warner, in the U.S.⁵. Dr. Warner greatly altered the “U Series” formula, which would now be known as the HAP Caps. Dixie decided to pursue this further and therefore she and 30 other families met with Dr. Warner.  The HAP Caps did not have much impact on Dixie’s daughter.  By this time research had been published that showed metabolic differences in patients with Down syndrome.  Using this research, input from numerous scientists and her daughter’s blood and urine analyses, Dixie started to develop her own TNI formula. Dixie “fine tuned” the formula by looking at the specific abnormalities measured in her daughter’s blood and urine testing.  

The scientists who were initially involved by researching abstracts and articles which documented metabolic and nutrient concerns in Down syndrome also helped reference the TNI formula to the U.S. RDA for safety.
Today, the Nutrivene-D formula still uses scientists and doctors to make updates and improve their formula based on current research and studies which are done. Certain nutrients may be added or changed, as new research emerges. The Nutrivene-D formula is used by thousands of families throughout the world.

Conclusion

Since the calm beginnings in the 1950’s and Dr. Turkel’s approach with “mega-doses” of nutrients, to where we are at currently with Nutrivene-D, it has been a long path and will continue to be an ever changing path as new research emerges. Dr. Turkel started with a good idea, but thanks to new research, and much work to scientists, parents, and doctors, we can now safely give children with Down syndrome a formula which is “targeted” to meet their specific metabolic and nutrient needs. 

1)    Medical Treatment of Down Syndrome and Genetic Diseases by Henry Turkel, M.A., M.D., Ilse Nusbaum, M.A. Copyright 1985
2)    Warner House Clinic History. http://www.warnerhouse.com/
3)    Down Syndrome and Vitamin Therapy, Unlocking the Secrets of Improved Health, Behaviour and Intelligence by Kent Macleod. Printed October 2003
4)    A Circle of Friends II by Aunt Gini Mullaly & Deborah Saxton-Bolt. Copyright 2000.
5)    Smart Drugs & Down’s Syndrome by Steven Wm. Fowkes & Ward Dean, M.D. February 14, 1994 issue of Smart Drug News. [v2n10]




Tweet

31 for 21: John Marrs

I had quite a bit of response from the Expectations post written by Jenny Marrs. Her son, John, is now 17 years old. I emailed her and asked her how things were going with him now, since I had so many people curious as to how he was doing. So, here is an update on John.

I know there were others with some other questions on that post, which I will try to address in another post :).

If anyone would like to talk to Jenny, feel free to leave a comment here or send me an email and I can pass along her email addy :).

John is doing awesome.  He turned 17 on Sept. 19th.   He is still driving on a permit, going on 2 years now, hoping to get his license soon. He is driving with an instructor two times a week through the school.  He's a junior in Paris High School, taking Earth Science, Algebra, Government, Construction, Literature, and Service, and is always on the honor roll.  He does have an aid who offers one on one teaching in the classroom.  He is not allowed to be near John during any test.  His function is just to give John one on one assistance while classroom teaching or discussion is occurring.    John helps on the farm, and is learning to operate equipment. His dad works construction, and has equipment, so we are hoping John will go right into the business with him.  He has been successful training dogs for obedience and absolutely loves dogs.  He loves the horses, and can feed and care for them himself.  He's a very good rider.  He loves basketball and has gotten very good at shooting. It is hard for anyone to beat him in a game of horse or pig or 21.  He loves riding bikes.  I have a website for him, it's not actually up to date, but there are lyrics on there he has written. Some of his writing is unique in that he words things differently...somehow deeper, I think. But then that's me.  http://mysite.verizon.net/ress9jo2/johnmarrs/  

Tweet

31 for 21: Expectations

I thought I would share a few articles from our book over the course of the month. One article in the first section of the book is written by Jenny Marrs. She's the mom of a teenage boy with DS. She has done a lot of work for kids with DS, but especially her son and pushing to his highest potential. She is well known (especially by the "old-timers" on there) on the Einstein-Syndrome list.

Expectations
By Jenny Marrs

John is 13 years old and has Trisomy 21 Down syndrome.  He took his first steps at 13 months, and began reading at 2 ½.  He knew all the alphabet and numbers by age 3, and was fully potty trained before his 3rd birthday.  Prior to Kindergarten, John was tested in word recognition to be at a first grade 6th month level.  In Math, he tested at a Kindergarten 6th month level.  Today he continues to excel in a regular 7th grade classroom doing the same work as his peers.

John is not the only child with Down syndrome achieving such accomplishments within typical time frames.  John is merely doing the things all children with Trisomy 21 are capable of accomplishing—provided they have not acquired medical or other complications which could affect learning capabilities.  Some complications that could affect learning capabilities are untreated thyroid, hearing or vision disorders, autism, brain damage, attention deficit, fetal alcohol syndrome or constant upper respiratory infections.   I do not believe that there exists a range of functioning in persons with Down syndrome merely due to the 47th chromosome.  I believe every child with Down syndrome is capable of reaching for the stars.  It is crucial that parents believe this, and then help their children to achieve this goal.

For the most part, in today’s world, I do not see a society that believes in what the child with Down syndrome can do.  The available information is outdated and there is an abundance of old stereotypes and misconceptions among professionals---professionals who should know better.  Parents have a hard job helping their child reach for the stars because they go against what most educated professionals think and say.  I began this journey by thinking that John would teach THEM and that we would be opening some eyes.  Some have been opening, but very, very slowly.  In general, rather than give John the credit for his hard work, most just like to shrug and say, “He’s high functioning Down syndrome.”   In reality, John’s function is a reflection of the opportunities he has been given and the hard work he has done. 

I think the biggest burden on our children today is the many labels put on them, beginning with “Down syndrome”.  In 1865, Langdon Down observed these children and made a list of symptoms that he felt made them different from other children. The word “syndrome” is defined as “a list of symptoms”.   Because of this list made in the year 1865, our children are burdened at birth with this label and list.  This label/list is why many people look at John but can’t see the child.  This is why some of his past doctors were willing to accept illness for him, and it didn’t even occur to them to attempt wellness.  This is also why most of society has so many misconceptions about Trisomy 21.  Down syndrome is a label that suggests symptoms that may or may not be there; symptoms that CAN be addressed and for the most part eliminated.

John has a medical diagnosis of Trisomy 21.  Research tells us that there are metabolic issues we need to address to prevent the extra chromosome from wreaking havoc on John’s system.  We address this issue.  However, John does not now carry nor will he ever carry labels designed to hold him back.  We know his many strengths as well as his weaknesses.  This allows us to address each issue as it pertains to John.  Not as it pertains to an entire segment of the population.  Not as it pertains to a study, and not based on past performances of various children in various situations.  Just John. 

Another injustice to our children is the developmental chart suggesting almost everything will be later.  Buy into that thinking, and everything is almost certain to be later.  Because of low muscle tone, John did need more help to accomplish gross motor milestones, but we did accomplish them in a typical time frame.  I believe in the importance of the “windows of opportunity”, and I believe those windows are the same in all children.  I believe that the child who develops within those windows of opportunity has an edge.  The professionals that I first looked to for guidance, my doctor, therapists, and Early Intervention providers, all accepted the “special” charts, and did not strive for a normal development.  Normal development would not, in most of society’s eyes, be realistic.  “Reality” to them was that John had Down syndrome, and their education and experience had taught them to expect less.  My reality and experience tells me that if you expect less then less is exactly what you will get! 

Because of low expectations, professionals are stifling our children’s potentials.  It begins at birth and continues throughout our children’s lifetimes.  As it turns out, the child fulfills all of those dire predictions, not because that was his potential, but because he was educationally deprived by a very archaic system.

Granted, society has come a long way from the days when the child with Trisomy 21 was institutionalized, but we haven’t come nearly far enough.  We have advocate groups whose goals are to have society accept our children’s disability.  Society is much TOO willing to accept disability.  I not only want society to see John, I want society to see John’s potential.  Just look at the list of symptoms that a child with Down syndrome is expected to have.  Next look at the description of Down syndrome in the American Medical Association medical book.  These do not describe my child.  This tells me that we have a long way to go.  These are examples of society’s opinions.  This is what is taught to our future professionals.  This is how they view Trisomy 21.  I will not put my child’s health or educational welfare in “society’s” hands.  “I will not let his schooling interfere with his education.”  (Mark Twain)

I am tired of seeing television shows that are intended to make people feel all warm and fuzzy because they accept individuals with Down syndrome and their so-called disability.  I want to see television programs that concentrate on ability, and will educate the public about our children’s true potential.  When John was an infant, care providers leant me a video portraying a child with Trisomy 21 who was included in a typical classroom.  Instead of focusing on a child beginning his school career, this video takes an older child who has been educationally deprived and who lacks discipline, and then follows him through the school year.  The truth is, the child with Trisomy 21 is capable of learning at an equal or above average rate.  Why do we accept educational deprivation for the child with Trisomy 21? 

I think most children with Trisomy 21 display signs of having difficulties with speech, and this makes it all the more difficult for people to see their potential.  This speech delay, coupled with society’s misconceptions, leads to greater misunderstandings.  If a child has a hard time presenting his knowledge through speech, it is hard for anyone to grasp how smart he is.  John had a very large vocabulary when he entered Kindergarten, but he had a hard time making sentences.   He was not confident with speaking, so he spoke very little.  Naturally, people made incorrect assumptions and judgments based on this child with a speech delay, and a label of Down syndrome.  When I told people of John’s reading capabilities, it was as if their eyes would glaze over.  They smiled.  They were polite.  Finally, they changed the subject.  I found that I needed to make videos for these people, or provide the opportunity for John to prove his capabilities in person.  Then the mouths would drop open, and they would ask, “How did he do that?” 

My heart goes out to the many children who have suffered because of society’s misconceptions.  These children have such wisdom to share and yet are unable to because they have a speech difficulty, and because society has a listening disability.  These children know that we are stifling their potential.  They know so much more than we can even grasp, possibly because they are content to be silent and listen, which is the avenue to true wisdom.

We need to believe what these children can do; we need to help them achieve their potential.  Remember, the syndrome doesn’t have to happen.  When society sees the extra that is in these wonderful children, they will perhaps change their tendencies to labels that predict doom.  Perhaps an amniocentesis that suggests Trisomy 21 won’t be seen as an opportunity to make a choice.  Rather, this child will be seen as the gift that he is; a child with more, not less; a child who will teach us more than we will ever dream of teaching him.  This child touches the heart in a very special way, and has a profound message for those who have the wisdom to listen.




Tweet

The book is on Barnes & Noble and more online stores!

I did a random search today for my name just to see what would come up. And what do you know, I found some useful information!

Our book, Down Syndrome: What You CAN Do, is available at Barnes & Noble, Amazon.ca (Good for Canadian families), Amazon.co.uk (Good for European families) and many other online bookstores. I have no way of knowing how many of these books are sold, so I can only hope that the book is actually reaching a larger audience than we know!

How exciting!

Here are the links:

Barnes&Noble.com
Amazon.ca (Canadian families!)
Amazon.co.uk (European families!)

I also found a few other miscellaneous online bookstores that carry it. Some of the prices are a fair amount higher than just the retail price (which the 3 links above have). But I thought I'd include them here.

TheBookDepository.com
Booktopia
Alibris

Of course, if you get it directly from the printer, LuLu.com, it's the cheapest. But, sometimes it may not be the easiest, especially for the Canadian or European families. This is the direct link to the book, http://stores.lulu.com/gotdownsyndrome.

And there is also the book available at Nutrivene.com.


Tweet

Thyroid Concerns...

Since thyroid problems are commonly dealt with in people with Down syndrome, I thought I'd share an article a doctor wrote for our book.

This doctor has dealt with quite a few people with Down Syndrome and thyroid problems. There is a lot more info in our book on the thyroid also :).

Doc Don, Downs, and Hypothyroidism

The Major Handicap

As infants, they begin life with a host of handicaps. Their mothers are usually advanced in age. Indeed, their risk of their illness increases with each passing decade of their mother’s age at conception.

Infancy is difficult as they tend to be less active than healthy newborns, often feed poorly, and growth is usually sluggish. Bowel movements are frequently a problem, and constipation can be so bad that rectal prolapse is not rare.

They lag behind their peers with linear growth being more retarded than their tendency to gain weight. If the diet includes adequate carotene, there might well be a yellow-orange tinge to their thickened, puffy skin. They retain fluids easily, and may have dry and scaly skin.

Mental and physical retardation are the most common outcomes, and parents are frequently frustrated by the difficulty getting health professionals to help. They are prone to frequent illnesses, obesity, hearing problems, and delays in mental, emotional, physical, and sexual development.

The above is pretty much a classic textbook description of Cretinism that is Undiagnosed, Untreated, HYPOTHYROIDISM in childhood. Also, it is very similar to descriptions of Down’s Syndrome (DS). Indeed, these conditions overlap often enough that some investigators feel that Hypothyroidism is not only the cause of many of the problems associated with DS, but that it may indeed be a causative factor in DS. (David Derry, MD, PhD, personal communications)

 If an infant is born without a well functioning thyroid gland, the physician has a matter of weeks to figure out what is wrong and fix it. If the doctor misses this Golden Window, that child is condemned to a lifetime of mental and physical retardation; and even good treatment later in life cannot make up for the missed critical time for maturation. The window lengthens as the child matures, but the severity of the consequences is always much greater for the underdeveloped brain than for the adult.

Golden Carmen

Carmen was a beautiful baby with DS crawling around my office as her mother told me that she had serious worries that Carmen had Hypothyroidism. Ginger had brought Carmen from Connecticut to see me, because she could not get her Pediatrician or the Pediatric Endocrinologist to listen to her concerns. Over the past months, Carmen had suffered from ear infections, eye infections, asthma, a heart murmur, and extreme difficulty functioning normally. Her favorite “play” was to sit in front of the mirror and look at herself. Later, her mother told me that when she revealed to me that Carmen was 20 months old and had not grown an inch since 10 months, she saw my jaw drop. (Her mother, a wonderful person I met on a DS therapeutic nutrition bulletin board, gave me full permission to share this story, “if it had a chance to help just one person.”)

Carmen ate poorly, tended to whine a lot, and didn’t especially like activities with other kids. It seems that the Pediatric Endocrinologist didn’t feel that “lab tests were abnormal” enough to consider treatment of Carmen. If you carefully treat for Hypothyroidism when it doesn’t exist, no harm will be done. If you do not treat when it is present, that child will suffer for the doctor’s stupidity for the rest of their life. (At times, I have trouble not cursing an arrogant physician who would risk the life of a child for some lab slip.)

Long story made short: I initiated treatment for Hypothyroidism, Carmen and Ginger went back to Connecticut, and we chatted on a regular basis. In a short time, Mom wrote to tell me, “Carmen is eating like a little piggy and giggles all the time.” She had real toys and real friends, and the Pediatric Endocrinologist reluctantly “allowed” Carmen to stay on the appropriate treatment.

Over the years, I’d choke back tears when things like this happened. Not for my patient who had the wherewithal to get the needed help, but for the countless people who were victims of uniformed, arrogant, ignorant, or greedy physicians who didn’t recognize and treat what is the basis for the most serious health problems that exist.

It’s Everywhere And Affects Everything…

Because thyroid hormone activity regulates how many calories each cell is allowed to burn into energy, for its own use; that small, butterfly shaped gland weighing less than an ounce sits in your throat and controls virtually every function in your body. Thyroid disease plays a major (if not the major) role in: conception, fetal development, pregnancy and delivery, ongoing growth and maturation, cardiovascular diseases, stroke, brain development and thinking, skin and hair texture and growth, and any other health concern one could imagine. (You might like to read, “Solved: The Riddle of Illness” by Langer, MD.)

Thyroid Disease Is Common…

Some parts of the Country have always had an abundance of thyroid problems. The Great Lakes Basin has long been called the “Goiter Belt.” (A goiter is an enlarged, probably malfunctioning thyroid gland.) Iodine is critical for adequate thyroid function. The use of fluorides in the water, tooth paste, and plastics, and many drugs has seriously contributed to an increase in thyroid disease by preventing iodine utilization. (And, incidentally, there is NO reasonable evidence that adding this dangerous, toxic industrial waste to drinking water helps teeth.)

The chlorine that is put in water to “purify” it, actually displaces iodine in the diet and prevents adequate uptake, as well. (Incidentally, it reacts with impurities in water to form known carcinogen; and it is not banned in Europe where ozone-activated oxygen does the same job, safer and cheaper.)

Iodine was used in bakery goods as a dough conditioner, and a slice of Wonder Bread (for all of its evils) could easily provide a reasonable supply of dietary iodine to prevent a goiter. But, that is not allowed, and instead, bromine which is another iodine antagonist is now used. (“Iodine: Why You Need it, Why You Can’t Live Without It” by David Brownstein, MD does a great job with the role of iodine in health.)

In addition, many of the chemicals used in plastics and foods prevent adequate thyroid function. For all the problems most people have, DS makes successful adaptation to Hypothyroidism even more difficult. Communication difficulties coupled with low expectations from health care professionals often condemns the DS child to one more unnecessary difficulty.


There Is No Money In Treating Not Thyroid Illness…

If a doctor adequately treats thyroid illness, the patient gets markedly better in a relatively brief period of time and uses cheap medicine. There is no thyroid replacement that is still expensive and on patent, and no well patient will want to come in more that every few months. Your doc is not going to get neat gifts from the thyroid replacement (about 30-50 cents a dose) people that Prozac ($2 to $5 a dose) or Lipitor ($5 or more a dose) people pass out. And, adequate thyroid replacement can solve many depressions and many problems with elevated cholesterol so that people don’t need frequent trips back to the doc.

If you do surgery, it is even more lucrative to not treat thyroid problems. If a women comes in with “Periods from Hell,” (Crampy, clotty, heavy menses that go on for 7-10 days and end with passing “things that look like calf’s liver,” as a patient explained to me.) adequate thyroid replacement usually resolves it. End of story, end of financial gain. However, don’t treat; and she will eventually return begging for a hysterectomy. That is about 4 grand for a morning’s work. You do the math. Coronary Artery disease is far more common in hypothyroid people, and bypass surgery or a stint is even more lucrative than a hysterectomy that could have been avoided with a 50 cent a day pill.

In general, almost all medical problems are more common in hypothyroid people. Heart disease, obesity, cancer, stroke, and infectious diseases all occur much more often in the person with low thyroid function.

Not Much Is Expected From DS Kids…

When I used to do Psychiatry, nothing would anger me quite as much as when another physician would ignore my patients’ valid complaints with a shrug and, “(what do you expect) they’re a Psych patient.”

I feel the same way about doctors who ignore valid complaints of weight gain, constipation, increased infections, decreased alertness, and slowed mental and physical maturation with the rationalization that it’s because “they have Down’s.”

This sin is especially frequent when the DS kid has one of the many sorts of hypothyroidism which cannot be diagnosed by labs alone. I have people come from all over the country because they could not find a doctor smart enough to shut up and listen to the very cogent argument that they made for Hypothyroidism, just because the lab could not do the thinking that the other doctors should have.

Thyroid Labs Or The TSH, Full Speed Ahead…

When this chapter was suggested to me, I think that I was supposed to help parents second guess doctors and other lab jockeys with the numbers that the labs crank out. More important than that is to realize a thyroid condition cannot be diagnosed by labs alone, and there are NO labs that can rule out the presence of a thyroid problem. Anytime a doctor is looking for a Diagnosis (That’s fancy for “What’s wrong?”), 85% of the information comes from the History (What has been happening to my patient before they came to the office?); about 10% comes from the Examination (How does this person appear to the, hopefully, well trained eye?); and the Labs, in reality, only contribute about 5% to most diagnoses. This formula is the one we are all taught in Medical School, has been the model of Good Medical Care since Hippocrates, and which no reasonable doctor would deny.  Yet, all this good sense is totally ignored daily by physicians dealing with thyroid problems.

Normal Means You Are Like Other Sick People…

On the average lab slip, you will see a number which is your value, and next to it a Range which the doctor is supposed to look at to tell if your number is “normal.” Something like this is common on lab slips:

Free T3                             2.4                                      2.4-4.4    pg / mL

Free T4                              0.80                                    0.80-1.80 ng /dL

TSH                                   4.0                                       0.4-4.3     mIU / L

In the “Good Old Days,” they would make the doctor look at each number and each range to see if your number was between the little number and the big number. Now they print abnormal values outside the normal column, and to be sure that you don’t screw things up, they will put an “H” or an “L” next to the abnormal value.

Ranges will vary from time to time and from lab to lab. While the above lab work is “Normal,” it is not necessarily healthy. Actually, if this was my lab work, I probably could not walk around the block under my own steam. That “Normal” range represents the middle 95.5 % of the scores of the (sick) people who we send to the lab because we suspect their thyroid is too high or too low. (Technically, “2 Standard Deviations either side of the mean of the scores.”) And if, by some fluke of luck, you are sicker than those other 95.5% of the people, you will lower the average, and it will then become that much harder for the next poor soul who comes along.

“We are People, NOT lab values” Mary Shomon

The next problem is that the lab values do not have anything to do with the state of health of the patient. Those same labs could have come from a living patient or a dead one, and there is no way to tell from the labs. The lab values are merely the lab’s estimate of the amount of various chemicals in the blood. And, those chemicals may, or may not, be related to the health of the patient. There are countless conditions that could allow identical labs and a range of patients from moribund to relatively healthy.

And Those Estimates Are Not Always Good Ones.

To further muddy the waters, labs do not always do a reasonably good job. When the Centers For Disease Control has sent out standardized laboratory specimens to hospital and commercial laboratories, between 8 and 25% of those tests come back with erroneous results, according to an article in The American Medical News (Langer, op cit). 

Turn Around And Look At The Tree!

To pay attention to lab slips, instead of to your patient, is as foolish as looking at the shadow of a tree, instead of looking at the tree. When I was in Medical School, back in the 60’s, if we dared to base treatment solely on a lab slip while ignoring the condition of our patient, we would earn a glare with admonition from staff, “Doctor, around here, we treat patients, not lab slips!” and we would be lucky to pass that rotation. Today, it is done routinely and is called “Standard of Care.” Be advised: your life and the lives of those you love are far more important than any lab slip. If the doctor you hire will not maintain your priority, it is time to look for another doctor. 

Labs are NOT a substitute for brains

Labs cannot diagnose anything! The labs only know what is healthy from what is sick because Clinicians have told the lab those things. Hypothyroidism was treated (more adequately) for more than a hundred years before the Clinical Lab was anything more than a place to ‘taste’ urine to detect diabetes. (Diabetes Mellitus means “passing through sweet” referring to the sweet taste of the urine of uncontrolled diabetics.) Physicians, who now think that they can use the lab instead of acumen, are crippling and killing countless patients. But, that keeps patients ill and is good for the Medical-Pharmaceutical complex.

Don’t Believe Any Doctor Blindly, Not Even Me

I advise all my patients to bring someone with them when they go to the doctor, listen carefully, ask lots of questions, and take notes or record the session. Then, learn as much about their problem as they can. Finally, decide what treatment and which doctor they want to work with. Your health is too important to risk on someone who doesn’t listen, understand, respect, and explain. No one can be as interested in your health as you and your loved ones. You would never take your car to a mechanic who insults your intelligence, makes things worse, charges an arm and a leg, and refuses to hear your real complaints. Give your health as much respect!

If You Think Hypothyroidism Is A Problem

Excellent books include: Hypothyroidism: The Unsuspected Illness by Broda Barnes, MD; Solved the Riddle of Illness by Langer, MD;  Iodine: Why You Need It, Why You Can’t Live Without It by David Brownstein, MD.

Great web sites include:  http://thyroid.about.com Mary Shomon who knows more about thyroid disease than any two Endocrinologists I have met; 

www.wilsonssyndrome.com/ A good look at a different kind of Hypothyroidism that is not found with labs.

www.drrind.com/ Dr. Rind has a good understanding of the interaction of thyroid disease and Adrenal Fatigue, a common illness that few doctors find.

www.dmichaelmd.com a chance to look at some interesting materials and an opportunity to share ideas.

A prayer that you and your loved ones get what is needed to get well.

D. Michael, MD, PC
(AKA Doc Don) © 2008

Oral Motor Development Started Young!

Andi Durkin, who is a mother on the Einstein-Syndrome list wrote to the list a few days ago with an amazing progress report on her little boy who has DS. He's just under 1 year old and is doing amazing in the oral motor area & his speech. Andi has worked hard & researched a lot on what she can do for him.

Sara Rosenfeld-Johnson (from TalkTools) says in one of her DVD's that if a child is doing OM therapy and the TalkTools program from a very young age (just a few months old), "normal" speech can be achieved. I think Andi's son is a great example of that with the progress that he has made so far. I'll just paste what Andi wrote below, since she outlines what they have done and how it has helped.

My husband, Kenny & I took Jett (11 months) to his first speech evaluation with Renee Hill of Talk Tools on Wednesday (through a scholarship from http://www.dsfflorida.org/). She was amazed! She said that she had to evaluate him using the typical scale, not the one for children with DS. She said he was on par and above the typical child. He has no tongue protrusion, great lip closure, strong jaw muscles, etc. He is on his way to clear speech! She said it was the easiest evaluation she'd ever done and had the least amount of suggestions.

A brief history of Jett's language success:

-He's been "babbling paragraphs" for many months. See/hear Jett at 3 months: http://durkinworks.blogspot.com/2010/06/jett-babbling-paragraphs.html.
-Randomly said clear words off and on starting with "Daddy" at six months. (okay, alright, go' boy, oh boy, hey)
-He said his first word of intention at 8 months old: "Water"
-Jett said his first two-word sentence on Sunday: "Poopy good-bye!" (I'll spare you the details!)

This progress didn't happen by accident, of course.

First, breast feeding helped to build his jaw muscles and help with tongue thrust, among many other things. (It was so difficult for the first month or so but he finally got the hang of it!)

Second, we've used James D. MacDonald's (jamesdmacdonald.org) communication methods since he was born.  You can see my stepson, Alex, mirroring Jett when he was 3 months old here: http://durkinworks.blogspot.com/2010/06/jett-milestone-day-talking-jett.html (My husband wrote that he started talking that day--but that wasn't the first day.)

Third, I read the article: The Oral-Motor Myths of Down Syndrome By Sara Rosenfeld-Johnson, M.S.,CCC/SLP (founder of Talk Tools) when Jett was 3 months old and followed all her advice. You can find the article in Qadoshyah Fish's book, Down Syndrome, What You CAN Do.  ( http://stores.lulu.com/gotdownsyndrome )

Fourth, Kay Ness gave an eye-opening/life changing speech to our DS group that guided me in many ways including emphasizing the importance of keeping our children's nasal and ear canals clear in order to develop proper speech. (http://senc.us/Down_Syndrome.html) Which eventually led to cranial sacral work, AIR tea and Dr. Block's methods to open his nasal passages & ear canal.

Fifth, through following Kay's ND program since 8 months, Jett has been developing his oral sensory skills (mesh feeding bag, massages, etc.) and increasing his vocabulary (flash cards, songs, etc.).

Sixth, Qadoshyah's blog entry about how to feed our children correctly helped prevent bad habits and showed how to use feeding as oral motor therapy: http://www.gotdownsyndrome.net/spoonfeeding.html

So, to Camille Gardiner (friend & DSFF), Kay Ness, Sara Rosenfeld-Johnson, Qadoshyah Fish, James D. MacDonald, Dr. Loi (TCM), Dr. Block, Vicki Booher (cranial sacral), Dr. Franz, and Kristin L. Worishcheck, the lactation specialist, who cheered me on, my mother and Kenny, Alex & Kathy Durkin....

  THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU!!!!

You can see more pictures/entries of Jett at http://durkinworks.blogspot.com/search/label/The%20Chronicles%20of%20Jett

I'm thankful the book, blog & website were all able to help Andi & Jett as well :).

One more mention....

Alright, one more mention of the book. I won't keep posting stuff on it, but like I said in another post, I'm working on making it more available for folks for the next few days, so gotta have a post here and there :).

Today, I added a sale to the book....from now until December 10th, you can get 15% off the book by clicking here.

You can also get an additional 10% off by entering the coupon code "TURKEY" at checkout. So, that gives you 25% off the book! Pretty good deal, especially for a 589 page book!

Share with anyone you think may appreciate it.

Also, don't forget to "Like" the book on facebook, since we'll be giving away a free book when we reach 100 "Likes." We're a little over half way there :)!

Hardcover!

Well, I'm going to take this week and maybe into next week to add more to the availability of our book. Today, I organized LuLu's storefront page for our book a bit more and also made a hardcover copy of the book available!

Yes, the hardcover is a bit more expensive than the paperback, but that's to be expected. A hardcover is $35.50.

I was also able to successfully get the book back out into the online marketplaces with the ISBN number, as we had a bit of an issue for a little bit with being able to buy from other places (like Amazon, etc).  Our book will also be available on Google's Book search within about 8 weeks, Lord willing. It will have a 20% preview available.

Stay tuned for more exciting things to come with the book. Don't forget to "Like" it on facebook on the left side of the blog here ;).

On Facebook!

I was corresponding with a mother who has a little boy with Down syndrome this past week and she was asking about different ways that we have advertised our book. She was giving ideas to help us get it out there more and advertise it more, since she has benefited from it so much.

One of the things we talked about was facebook. So, I decided to make a facebook page for it.

You can "Like" it on the left hand side of the blog, or you can click here to go to the page.

I will be adding some new things soon too. We'll be making a hard cover copy of our book available and also offering a special discount for a certain amount of time! Stay tuned :).

When the page gets to 100 "Like's", I'll have a drawing for one person to receive a free book! So, share with your friends and anyone you know who would benefit from this book.

10 percent off of Down Syndrome: What You CAN Do

I received a coupon today from LuLu, the company which publishes our book for 10% off. You can order our book from the link right at the top of this blog, or by clicking here.

So, if anyone wants to order an eBook or print copy of our book, Down Syndrome: What You CAN Do, you can get 10% off by entering the coupon code below. It's good until Septembe 30, 2010. Pass onto anyone you know who may be interested :)!

Coupon Code to enter at checkout: AUTUMN

If you've bought our book, we'd love to hear. So, leave us a comment and let us know how it has helped or what you think of it :)!

Free Shipping All Summer!

I received an email from the company which prints the book my mom & I edited and compiled, Down Syndrome: What You CAN Do and the email had a special discount with it. All summer, any order over $19.95 will receive free shipping! So, it works out perfect, since our book is $22.73 :). This is a good $5-$10 saving!

You can order the book & see a 15 page preview at http://stores.lulu.com/gotdownsyndrome.

A Mission of Hope

I thought I'd share the article I wrote for our local DSA's monthly newsletter. I can write an article for their newsletter whenever I want, so if anyone has any other ideas for topics, let me know :).

~~~~~~~~~

A Mission of Hope, Truth & Acceptance

My little brother, Osiyyah came into our lives 5 years ago. The day he & his twin sister were born, our lives have been forever changed because of him and the extra chromosome he sports, but it has all been for the better. It has been a huge blessing that God put him into our life.

When he was born, the information and “help” we were offered was so dark & gloomy. It was all this stuff he “wouldn’t” do or how hard our life would be with him. This was in 2005 and as we quickly found out, there is so much that can be done to help children with Down syndrome achieve their highest potential. You would think that we would have been offered all the powerful, helpful resources that are available here in the United States and the potential children with Down syndrome have. Instead of such a dark, “I’m sorry you have a baby with Down syndrome . . . and these are all the things he won’t be able to do.”

Because of this, my mother and I purposed to write a book about Down syndrome at some point to be able to give to families so that they would have access to all the helpful information a lot sooner than we ever did. And so, in the fall of 2008, our book was finished. And appropriately titled, Down Syndrome: What You CAN Do. We edited the book and had resources from all kinds of doctors, therapists, professionals and families put into the book. The introduction was written by Dr. Lawrence Leichtman. The foreword was written by Karen Gaffney. Many other well known therapists, such as Pat Winders and Sara Rosenfeld-Johnson (Talk Tools) also contributed. The book ended up being 589 pages long and full of resources that we wish we would’ve had access to in those first few months after Osiyyah’s birth.

In the United States, families who have a child born with Down syndrome or those who decide to keep their child with Down syndrome because of a prenatal diagnosis, often times hear a very sad, unhopeful picture from their doctor, social worker or whoever the “professional” might be. I have read the stories of those who didn’t get a sad picture when they were given the diagnosis. But, that is not the majority. This same thing happens in European countries, but it’s far worse.

In European countries, nobody knows the multitude of options that are present in today’s society. And so because the government supposedly “knows better”, the majority of these parents leave their infants to live in a orphanages and mental institutions.  Most children are in an orphanage until 4-5 years old and then transferred to a mental institution, where the death rate is very high.

These babies & children are tied to cribs or strapped down for hours or even days on end. They are starved of love, adequate care & proper nutrition. Not routinely given baths and treated with hardly any compassion. All because of a special need or extra chromosome they might have. How sad & sickening is that?!

As an example, one family who recently adopted their daughter with Cerebral Palsy from the Ukraine wrote on their blog (http://stumbofamilyadoption.blogspot.com),

"So we asked Nina today about her life at the orphanage, not sure if she understands us, not sure if she knows how to communicate with us.

‘Nina?’ I asked, ‘Were you tied down on your crib? Did you have to lie down and they would tie you?’ She looked at me, a sad expression, her little lip came out, and the tears started to come, she said softly, ‘yes.’ And she cried some more. I held her so close to me, wishing I could take that away from her, wishing that somehow she had not had to go through that. Andy asked her why they did that. ‘Nina naughty, Nina naughty.’ She responded.”

Because of this and the need for proper education and information in these countries, a new off-shoot of Reece’s Rainbow Adoption Ministry called Connecting The Rainbow (CTR) was formed. CTR is a volunteer group that gathers therapy tool donations, book resources and any other helpful material to deliver to the few families who have decided to keep & raise their children with Down syndrome in these European countries.

CTR just took their first trip the beginning of April and brought the 250+lbs of donated items to families in Bulgaria.  The small support group in Bulgaria includes 36 children with DS ranging in age from 6 months to 13 years old. These families are going against the grain in their country so much and can use all the help and resources they are given.

We donated a hard copy of one of our books to CTR on Shelley’s first trip to Bulgaria in December. Shelley just completed the adoption of her family’s 3^rd child with Down syndrome from Bulgaria. A 7 year old boy from a mental institution. On Shelley’s last trip to Bulgaria in April that included her bringing her son home and the CTR mission trip, we sent 21 CD’s with copies of our book on it to the families in the support group.

Shelley & Leah (CTR) were also able meet with some officials in Serbia in the hopes that a flow of helpful information can be brought there as well. Hopefully the “trend” of orphanages & mental institutions can be stopped. CTR is also working to try to establish connections in Ukraine & Russia. It is all a work in progress and will take a long time. But every family who decides to raise their child with Down syndrome is one less child in the statistic of 147 million orphans worldwide and one less child who will see the abuse & neglect of an orphanage or institution.

Down Syndrome: What You CAN Do can be purchased from http://stores.lulu.com/gotdownsyndrome. A hard copy of the book is $22.73 plus shipping and an e-Book is $5. The book is priced so low because we want it affordable for anyone to get. We did not write a book to make money, we wrote a book to help families.

To see what you can do with Connecting The Rainbow check out their website at www.connectingtherainbow.com. To find out more about internationally adopting children with Down syndrome you can visit Reece’s Rainbow at www.reecesrainbow.com.

~~~~~~~~~~~~

Busy

Life has been busy since the last time I posted. A road trip to Dallas one weekend and then a road trip to NYC area/NJ last weekend. And then regular life in between. Yeah, crazy.

I just got done writing an article for our local Down syndrome association monthly newsletter. The article is titled "A Mission of Hope, Truth & Acceptance" and is about our book, Connecting The Rainbow and the orphanages and institutions in European countries. I'll post it here once it is proof-read and good to go :).

We're also getting together an entry for Osiyyah to be in the 2011 calendar that our DSA puts out. That should be fun.

I'll try to post something a bit more interesting and good research sometime soon here. I do have some stuff I can post up.

Oh and since I mentioned our book, the company it is printed through is offering a code for free shipping. The code is FREEMAIL305 and is good until May 1st. Again the book can be ordered through http://stores.lulu.com/gotdownsyndrome

Until next time,

Connecting the Rainbow & Our Book

As some of you know, my mother & I published a book about Down syndrome a little over a year ago.

The book, Down Syndrome: What You CAN Do is 589 pages long. My mom & I basically edited it and compiled all the info. Lots of doctors, therapists, parents and families wrote information, articles & stories for the book. Which makes it an excellent resource. Karen Gaffney wrote the foreword. Dr. Lawrence G. Leichtman wrote the introduction. Patricia Winders gave us a physical therapy article to include. Talk Tools & Sara Rosenfeld-Johnson gave us permission to use several articles from them. Just to name a few . . . but lots of other doctors and professionals gave us their time, information & articles.

It took us awhile to compile it together, but it has been well worth it. The book is only $22.73 for a hard copy & $5 for an e-Book. Yeah, I know that is really cheap in price. But, we didn't write this book to make a fortune. We wrote this book so that it will help other families and give families hope to realize there is so much that can be done to help children with Down syndrome.

You can see a 15 page preview of the book and it can be ordered from here.

I have a question for ya'll: Would you guys like to see a hardcover version of our book? Obviously it would be more expensive, but I'm sure there are some who prefer hard cover books over soft covers.

We recently sent International Nutrition several hundred flyers about the book and they also ordered a decent amount to start to provide it on their website. Hopefully they'll have good success with it.

A little side note . . . If anyone would like flyers for their local Down syndrome associations, new parent packets or just to have to give out to whomever, let me know and I'd be glad to mail you some. Our local DS association put a flyer in each of their new parent packets.

Now, all that to bring me to this, the main reason for the post . . . Connecting The Rainbow. I've mentioned CTR before, but thought it would be good to mention it again. We sent a hard copy of our book with Shelley on her first trip to Bulgaria to give to the families there who have chosen to keep their children.

Since that trip, Shelley & CTR has been gathering resources & tools to take to the families in Bulgaria when Shelley returns to bring her son home from Eastern Europe. They have received a great response and gotten a lot of good therapy tools, other tools & resources to take to the families in Bulgaria.

Because of that, I have a stack of 21 CD's sitting here by my computer that have a PDF of our book burned onto them. I'll be mailing them out this week, Lord willing, to Shelley and she'll take them with her on her trip to Bulgaria in April.

Qadoshyah

Our book & Longvida experience featured at Jaden's Journal

Noelle from Jaden's Journal & My Healthiest Life asked me to write about the changes we've seen in Osiyyah since starting Longvida Curcumin. While she was at it, she also mentioned our book (Down Syndrome: What You CAN Do) in her post.

You can check it out at this link ~ "Is Curcumin A Breakthrough Treatment for Down Syndrome?"

Qadoshyah

Down Syndrome: What You CAN Do is available at Amazon!

Our book which we recently published, Down Syndrome: What You CAN Do is now available through Amazon! It took a few months to get it into Amazon, but we are very glad to announce that it is finally there.

You can see the book at this link:

Down Syndrome: What You CAN Do by Qadoshyah Fish

We also have full color flyers printed that can be included in new parent packets, or just to hand out to anyone you feel would be interested. Feel free to email (qf @ gotdownsyndrome.net - remove spaces) if you would like some mailed to you!


Qadoshyah

Update about the book

We have ordered a copy of our book for Sarah Palin and will be mailing that to her soon. We also have a local lab that would like to have a copy to keep in their waiting room. I may mail a copy to Cathy McMorris-Rogers and Sam Brownback - both have children with DS.

I will be giving our local library a copy of the book this week. The Tulsa library ordered 6 copies of the book for their various branches (how exciting!). I plan on suggesting the book to libraries across the country also.

Qadoshyah