Archive for September, 2011

In a previous post called  Tourette Syndrome and Hypnosis I introduced our new endeavor of trying hypnosis to reduce my son’s tics.  Our doctor, who is a psychologist at a teaching hospital, seems to be real good.  I am not sure if the difficulty of finding open time slots is an indication of a good doctor.  Originally when we reached out to him, it was five months before we could get an appointment.

At this point, my son has seen this doctor three times.  My son enjoys seeing him because the doctor is a big joker, and he is constantly testing to see if you are listening.  My son’s remark to me was that this was the best doctor he ever had, which had been many.  In these three appointments the doctor started to show my son how to do self-hypnosis.

The doctor calls this self-hypnosis process the Three and Six.  The process starts off with deep breathing and the eyes closed shut.  The rhythm consists of breathing in for three seconds and breathing out for six seconds.  This wasn’t anything new for my son, because in the past he learned bio feedback, which also has a similar deep breathing technique.

While the deep breathing is going on, the doctor facilitated relaxation, by calmly describing the relaxation of the body, starting with the feet and working upward to the head.  The doctor suggested that my son visualize a relaxing scene.  Once again, he facilitated the visualization by suggesting different characteristics of  the scene.  An example would be, asking if it is a sunny day or if my son could feel the warm breeze.  I have used visualization as a relaxing and focussing technique with my son since he was three years old. I found that if you focused using all of your senses on the distinct details of the scene, the more relaxed you could become.

One thing to note is that the doctor asked questions to my son throughout the session.  I was surprised that the talking did not break the relaxed state.  Once my son was relaxed, he described a specific visual item, which in this case was a stop sign.  After asking my son if he saw it, he explained that when my son is having that feeling that the tics are going to start he should immediately go into the Three And Six mode and visualize that stop sign.  He then told my son that the stop sign is very special and if you focus on the stop sign the tics will stop, or reduce in intensity and longevity.

While we were at the appointment the doctor also helped my son to visualize and apply self-hypnosis when he takes a shot for his diabetes.  The goal was to teach my son how to use the self-hypnosis to not feel any pain.  After focusing on a specific location for the shot, the doctor asked my son to rate the numbness of the spot, with zero being not at all numb and ten being completely numb.  The doctor then had my son imagine the feeling of numbing ointment that we sometimes use.  At the beginning of this session my son rated the numbness a zero.  By the time the doctor walked him through the process of the self-hypnosis, my son rated it an eight.  It was really remarkable.

Since these appointments, my son has been using the Three and Six technique both at school and at home.  His teachers remarked that he is really giving it his all.  At home he typically does it right before we have to change out his inset for his insulin pump, which has a needle poke for inserting the cannula, which is how his insulin is administered.  We have found that the self-hypnosis process is practical when my son has a warning that the tics are going to start.  If he doesn’t have the warning and instead immediately goes into a round of tics, which are pretty severe, the Three and Six method does not work.  When this happens he can’t concentrate enough to calm his body down.

The doctor stressed that my son should practice the technique.  He indicated that with practice the technique could become an automatic reaction for when the tics start.  The key is practice.   Unfortunately, practicing is not one of my son’s strong points, but we will keep working on this.  The other thing we need to work on is to be more conscious of triggers for the tics.  If he recognized a trigger, such as bright car lights at night, he could immediately do the Three and Six technique before the tics begin.  Unfortunately, we mistakenly didn’t add appointments as we saw the doctor and as a result of this, we are stuck waiting until November for our next appointment, or waiting for a cancellation.

To be continued . . .

Do you know about the Universal Declaration of Human Rights?  It is very interesting to read and reinforces that we have a lot of work to do in this world.

The Universal Declaration of Human Rights (UDHR) is a declaration adopted by the United Nations General Assembly (10 December 1948 at Palais de Chaillot, Paris). The Declaration arose directly from the experience of the Second World War and represents the first global expression of rights to which all human beings are inherently entitled. It consists of 30 articles which have been elaborated in subsequent international treaties, regional human rights instruments, national constitutions and laws.

THIS UNIVERSAL DECLARATION OF HUMAN RIGHTS as a common standard of achievement for all peoples and all nations, to the end that every individual and every organ of society, keeping this Declaration constantly in mind, shall strive by teaching and education to promote respect for these rights and freedoms and by progressive measures, national and international, to secure their universal and effective recognition and observance, both among the peoples of Member States themselves and among the peoples of territories under their jurisdiction.

Article 1.

  • All human beings are born free and equal in dignity and rights.They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.

Article 2.

  • Everyone is entitled to all the rights and freedoms set forth in this Declaration, without distinction of any kind, such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status. Furthermore, no distinction shall be made on the basis of the political, jurisdictional or international status of the country or territory to which a person belongs, whether it be independent, trust, non-self-governing or under any other limitation of sovereignty.

Article 3.

  • Everyone has the right to life, liberty and security of person.

Article 4.

  • No one shall be held in slavery or servitude; slavery and the slave trade shall be prohibited in all their forms.

Article 5.

  • No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.

Article 6.

  • Everyone has the right to recognition everywhere as a person before the law.

Article 7.

  • All are equal before the law and are entitled without any discrimination to equal protection of the law. All are entitled to equal protection against any discrimination in violation of this Declaration and against any incitement to such discrimination.

Article 8.

  • Everyone has the right to an effective remedy by the competent national tribunals for acts violating the fundamental rights granted him by the constitution or by law.

Article 9.

  • No one shall be subjected to arbitrary arrest, detention or exile.

Article 10.

  • Everyone is entitled in full equality to a fair and public hearing by an independent and impartial tribunal, in the determination of his rights and obligations and of any criminal charge against him.

Article 11.

  • (1) Everyone charged with a penal offence has the right to be presumed innocent until proved guilty according to law in a public trial at which he has had all the guarantees necessary for his defence.
  • (2) No one shall be held guilty of any penal offence on account of any act or omission which did not constitute a penal offence, under national or international law, at the time when it was committed. Nor shall a heavier penalty be imposed than the one that was applicable at the time the penal offence was committed.

Article 12.

  • No one shall be subjected to arbitrary interference with his privacy, family, home or correspondence, nor to attacks upon his honour and reputation. Everyone has the right to the protection of the law against such interference or attacks.

Article 13.

  • (1) Everyone has the right to freedom of movement and residence within the borders of each state.
  • (2) Everyone has the right to leave any country, including his own, and to return to his country.

Article 14.

  • (1) Everyone has the right to seek and to enjoy in other countries asylum from persecution.
  • (2) This right may not be invoked in the case of prosecutions genuinely arising from non-political crimes or from acts contrary to the purposes and principles of the United Nations.

Article 15.

  • (1) Everyone has the right to a nationality.
  • (2) No one shall be arbitrarily deprived of his nationality nor denied the right to change his nationality.

Article 16.

  • (1) Men and women of full age, without any limitation due to race, nationality or religion, have the right to marry and to found a family. They are entitled to equal rights as to marriage, during marriage and at its dissolution.
  • (2) Marriage shall be entered into only with the free and full consent of the intending spouses.
  • (3) The family is the natural and fundamental group unit of society and is entitled to protection by society and the State.

Article 17.

  • (1) Everyone has the right to own property alone as well as in association with others.
  • (2) No one shall be arbitrarily deprived of his property.

Article 18.

  • Everyone has the right to freedom of thought, conscience and religion; this right includes freedom to change his religion or belief, and freedom, either alone or in community with others and in public or private, to manifest his religion or belief in teaching, practice, worship and observance.

Article 19.

  • Everyone has the right to freedom of opinion and expression; this right includes freedom to hold opinions without interference and to seek, receive and impart information and ideas through any media and regardless of frontiers.

Article 20.

  • (1) Everyone has the right to freedom of peaceful assembly and association.
  • (2) No one may be compelled to belong to an association.

Article 21.

  • (1) Everyone has the right to take part in the government of his country, directly or through freely chosen representatives.
  • (2) Everyone has the right of equal access to public service in his country.
  • (3) The will of the people shall be the basis of the authority of government; this will shall be expressed in periodic and genuine elections which shall be by universal and equal suffrage and shall be held by secret vote or by equivalent free voting procedures.

Article 22.

  • Everyone, as a member of society, has the right to social security and is entitled to realization, through national effort and international co-operation and in accordance with the organization and resources of each State, of the economic, social and cultural rights indispensable for his dignity and the free development of his personality.

Article 23.

  • (1) Everyone has the right to work, to free choice of employment, to just and favourable conditions of work and to protection against unemployment.
  • (2) Everyone, without any discrimination, has the right to equal pay for equal work.
  • (3) Everyone who works has the right to just and favourable remuneration ensuring for himself and his family an existence worthy of human dignity, and supplemented, if necessary, by other means of social protection.
  • (4) Everyone has the right to form and to join trade unions for the protection of his interests.

Article 24.

  • Everyone has the right to rest and leisure, including reasonable limitation of working hours and periodic holidays with pay.

Article 25.

  • (1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.
  • (2) Motherhood and childhood are entitled to special care and assistance. All children, whether born in or out-of-wedlock, shall enjoy the same social protection.

Article 26.

  • (1) Everyone has the right to education. Education shall be free, at least in the elementary and fundamental stages. Elementary education shall be compulsory. Technical and professional education shall be made generally available and higher education shall be equally accessible to all on the basis of merit.
  • (2) Education shall be directed to the full development of the human personality and to the strengthening of respect for human rights and fundamental freedoms. It shall promote understanding, tolerance and friendship among all nations, racial or religious groups, and shall further the activities of the United Nations for the maintenance of peace.
  • (3) Parents have a prior right to choose the kind of education that shall be given to their children.

Article 27.

  • (1) Everyone has the right freely to participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits.
  • (2) Everyone has the right to the protection of the moral and material interests resulting from any scientific, literary or artistic production of which he is the author.

Article 28.

  • Everyone is entitled to a social and international order in which the rights and freedoms set forth in this Declaration can be fully realized.

Article 29.

  • (1) Everyone has duties to the community in which alone the free and full development of his personality is possible.
  • (2) In the exercise of his rights and freedoms, everyone shall be subject only to such limitations as are determined by law solely for the purpose of securing due recognition and respect for the rights and freedoms of others and of meeting the just requirements of morality, public order and the general welfare in a democratic society.
  • (3) These rights and freedoms may in no case be exercised contrary to the purposes and principles of the United Nations.

Article 30.

  • Nothing in this Declaration may be interpreted as implying for any State, group or person any right to engage in any activity or to perform any act aimed at the destruction of any of the rights and freedoms set forth herein.

Recently I read some articles about the desire to discontinue adding fluoride to our water systems.  As I evaluated the pros and cons of this debate I remembered a chance encounter I had with a gentleman named Harry I. Davidson.  This was in 1978 when I was in college.  On the day that we met, I was walking and met Harry I. Davidson while I was waiting at a stop light.  At the time I was wearing my volleyball shirt, from the days when I was on a volleyball team in high school.  The  shirt had our mascot, which was a tiger, with the initials of our town BRF set against the bright orange shirt.

On that day this little, old gentleman came up to me and said, he knew where BRF was and he was curious about what my association was with that town.  As we talked Harry introduced himself and we started discussing topic after topic.  I don’t remember all of the discussions, but I know I missed several green lights at the cross walk.

There is one topic that I have clearly remembered from that day.  I don’t even know why this discussion has stuck with me for so many years.  Harry was telling me that fluoride was bad and that it was a poison.  He was very adamant about this position.  He also told me that he believed it was a method for our government to control the longevity of populations, implying that fluoride shortens an individual’s life span.  Soon Harry and I parted ways, and I thought to myself that it was very interesting and wondered if it was true.  At the time I was anti-establishment, like many college students, but wasn’t necessarily a conspiracy theorist.  What he told me didn’t surprise me.  Till now I tucked that conversation into the back of my mind, until this day when I was reading about fluoride in our water systems.

After reading these news articles, I did a little research about fluoride and I found that there were groups throughout our country proposing that we discontinue putting fluoride in our water.  One of the groups is called Florida Action Group, who cites that there are many health effects that can be related to fluoride.

History of Fluoride in our Water

Prior to 1945, fluoride was regarded as an environmental pollutant.  Many industries were associated with it as a pollutant, such as aluminum industry or the phosphate fertilizer industry.

As a result of public relations campaigns, fluoride was transformed from an environmental pollutant to an essential nutrient necessary for producing healthy teeth.  Industries not only made millions from selling this environmental pollutant to water companies and toothpaste companies, but more importantly, it saved billions of dollars that would be required to clean up this environmental pollutant.1

As a result of this transformation, fluoride has made its way into our water systems, our toothpaste, and other oral hygiene products.  Fluoride has been used to fight tooth decay in children. The original studies indicated it should be used to improve the quality of children’s teeth, but were performed in 1945 and are now being questioned due to lack of quality in the testing process.

Medical Studies

Since then there have been studies that indicate that fluoride does not appear to have any decay preventing success.  It did not matter whether a child grew up in fluoridated, non-fluoridated or partially fluoridated communities. (Yiamouyiannis, J.A. “Water Fluoridation and Tooth Decay: Results from the 1986-87 National Survey of U.S.

There have also been studies that examined the teeth of every child in key age groups, and have found that the teeth of children in non-fluoridated cities were slightly better than those in the fluoridated cities. (Colquhoun, J. “Child Dental Health Differences in New Zealand”, Community Healthy Services, XI 85-90, 1987).

The most recognized problem with the ingestion of too much fluoride is dental fluorosis. This condition is characterized by the failure of tooth enamel to crystallize properly in permanent teeth. The effects range from chalky, opaque blotching of teeth to severe, rust-colored stains, surface pitting and tooth brittleness.

Meanwhile the medical community has begun to talk about the related dangers of fluoride.  From 1990 to 1992, the Journal of the American Medical Association published three separate articles linking increased hip fracture rates to fluoride in the water. In the March 22, 1990 issue of the New England Journal of Medicine, Mayo Clinic researchers reported that fluoride treatment of osteoporosis increased hip fracture rate and bone fragility.

The also cite some key findings regarding fluoride which include:

1) The addition of fluoride to water for the purpose of preventing tooth decay began in the 1940s with the belief that fluoride’s primary benefit came from ingestion of fluoride during the tooth-forming years. It is now acknowledged by the dental research community, however, that fluoride’s primary benefit comes from topical contact with teeth, and not from ingestion as previously assumed. It is also now acknowledged that fluoride is ineffective at preventing tooth decay in the pits & fissures of teeth – where the majority of decay occurs.

2) It is well-recognized that tooth decay rates declined quite dramatically in all western countries in the latter half of the 20th century – irrespective of whether the country fluoridated its water or not. Today, tooth decay rates thoughout continental western Europe – where 98% of the population does not drink fluoridated water – are as low as the tooth decay rates in the United States, where a majority of the population drinks fluoridated water.

3) Within countries that fluoridate their water, recent large-scale surveys of dental health – utilizing modern scientific methods not employed in the early surveys from the 1930s-1950s – have found little difference in tooth decay , including “baby bottle tooth decay”, between fluoridated and unfluoridated communities.

4) The largest dental survey ever conducted in the United States, by the National Institute of Dental Research in 1986-87, found no difference in Decayed, Missing & Filled Teeth, and a minimal difference in Decayed, Missing & Filled Surfaces among children who had lived their entire lives in a fluoridated or unfluoridated community.

5) Since 2000, four studies have reported that tooth decay does not increase, but continues to decrease, after water fluoridation is stopped.

6) Water fluoridation is often promoted as a means of preventing dental crises withinlow-income populations. It is becoming evident, however, that water fluoridation has been ineffective at preventing wide-spread tooth decay in poor urban areas of the United States – most of which have been fluoridated for 20 to 50 years.Recently I was reading through some medical articles and I came upon an article called, “Battles to end fluoridation have progressed in August (PR)” which is about communities that are fighting to discontinue putting fluoride in their water.  The reasons they cite for not adding fluoride to the water included:  there is an availability of topical fluoride in dental products, and it would create a cost savings of $50-60,000 dollars each year.

According to the handbook, Clinical Toxicology of Commercial Products, fluoride is more poisonous than lead and just slightly less poisonous than arsenic. It is a cumulative poison that accumulates in bone over the years.

Dr. William Marcus, believes that a study conducted by Battelle for the National Toxicology Program on the toxicology of fluoride shows that there were dose-related increases in bone cancer in male rats. Dr. Marcus also questions the removal by peer reviewers of cancers at other sites in the rats as well. Especially worrisome to Dr. Marcus is the fact that levels of fluoride that caused the cancers in the rats were lower than those seen in humans who ingested lower amounts, but for a longer period. These levels are generated because fluoride is accumulated in the body and is not secreted.

Dr. Marcus was formerly the chief toxicologist for the EPA’s Office of Drinking Water, but was fired in 1991 after insisting that an unbiased evaluation of fluoride’s cancer potential be conducted. Marcus fought his dismissal, and was able to be reinstated after demonstrating in court that it was politically motivated.

An additional and less well-studied concern is the interaction of the fluoride compounds added to water with other water additives. Most studies examining the addition of fluoride to water have used sodium fluoride, however, most communities use the less expensive forms such as silicofluoride, hydrofluosilicic acid or sodium silicofluoride. A 1999 study of 280,000 Massachusetts children shows that levels of lead in blood were significantly higher in communities using these cheaper compounds than in towns where sodium fluoride was used or where the water was not treated at all. (“Children’s Health and the Environment”,17th International Neurotoxicology Conference, Little Rock, Arkansas, October 17-20, 1999).

Optimum Levels Too High

The optimum level was set in the 1940s at approximately 1 ppm (equal to 1 mg/l). This was based on assumptions that the total intake of fluoride would be 1 mg/day, assuming 4 glasses of water were drunk per day. However, current intake of fluoride comes not just from the water supply. A study conducted by researchers at the University of Iowa and reported in the November issue of the Journal of American Dental Association found that 71% of more than 300 soft drinks contained 0.60 ppm fluoride. Toothpaste, beverages, processed food, fresh fruits and vegetables, vitamins and mineral supplements all contribute to the intake of fluoride. It is now estimated that the total amount of fluoride ingested per day is 8 mg/day, eight times the optimum levels.

The only admission that you’re likely to see is the 1997 addition of warnings on toothpaste tubes, that now say: “Don’t Swallow—Use only a pea-sized amount for children under six.” and “Children under six should be supervised while brushing with any toothpaste to prevent swallowing.” In areas where the drinking water already contains fluoride, brushing more than once daily with more than a pea-sized amount of fluoridated toothpaste can cause fluorosis, the discoloration and spotting of the teeth that affects an estimated 20% of children.

Government Proposals

The Department of Health and Human Services and Environmental Protection Agency are proposing the change because of an increase in fluorosis — a condition that causes spotting and streaking on children’s teeth.

Fluoride was first added to water in the United States in the 1940s to help prevent tooth decay in children 8 years and under.

The Centers for Disease Control and Prevention says dental fluorosis is highest among adolescents between the ages of 12 an 15. One reason for the increase in fluorosis: Americans now have access to fluoride from a variety of sources, including toothpaste, mouth rinses and prescription supplements, the Department of Health and Human Services says

“Dental fluorosis in the United States appears mostly in the very mild form — as barely visible lacy white markings or spots on the enamel,” The department said in a statement Friday. “The severe form of dental fluorosis, with staining and pitting on the tooth surface, is rare in the United States.”

He said that in the 1960s, when fluoridating water began, air conditioning was much less common. So children in hotter regions drank more water and needed lower levels of fluoride to protect their teeth, while children in colder climates drank less water and needed higher levels.

“Now since air conditioning is so common,” the official said, “you don’t see those differences in consumption, and that’s why they’re getting rid of the range and recommending one level.”

“Since 2005, EWG has been calling on federal agencies to respond to these findings, which come from National Academy of Sciences and many others, documenting that excess fluoride exposure poses dangers that range from discolored teeth to potential hormone disruption and neurotoxicity. HHS has taken an important first step. Now it’s up to water utilities to respond and for the EPA to lower its high, legal limit on fluoride in drinking water, which is more than five times higher than the new maximum recommended amount.”

Here are the top 10 reason to eliminate fluoride from our drinking water and dental hygiene products:

  1. Fluoridation is a violation of the individual’s right to informed consent to medication.
  2. Fluoride is not an essential nutrient. No biological process in animals or humans has been shown to depend on it. On the contrary, it is known that fluoride can interfere with many important biological processes and vital cellular constituents, such as enzymes and G-proteins. This makes fluoride potentially toxic even at low doses.
  3. Children in fluoridated countries are greatly over-exposed to fluoride. When fluoridation began in 1940s, 10% of children were expected to develop dental fluorosis (damage to the enamel involving discoloration and/or mottling) in its very mild form. Today, the prevalence in fluoridated countries is much higher—41% of all American children aged 12-15 are now impacted with some form of dental fluorosis (CDC, 2010), with over 10% in categories (mild, moderate and severe) that may need expensive treatment.
  4. The chemicals used to fluoridate water supplies are largely hazardous by-products of the fertilizer industry. These chemicals cannot be disposed of into the sea by international law, and have never been required to undergo randomized clinical trials for safety or effectiveness by any regulatory agency in the world. The U.S. FDA classifies fluoride as an “unapproved drug.”
  5. There is mounting evidence that swallowing fluoride causes harm. Fluoride has been found to damage soft tissues (brain, kidneys, and endocrine system), as well as teeth (dental fluorosis) and bones (skeletal fluorosis). There are now 24 studies that show a relationship between fairly modest exposure to fluoride and reduced IQ in children. Two of these studies suggest that the threshold for damage may be reached at fluoride levels similar to those used in water fluoridation.
  6. Swallowing fluoride provides little or no benefit to the teeth. Even promoters of fluoridation agree that fluoride works topically (on the outer surface of the teeth), and not via some internal biological mechanism (CDC, 1999). A recent U.S. study found no relationship between the amount of fluoride a child ingested and level of tooth decay (Warren et al., 2009). Topical treatment in the form of fluoridated toothpaste is universally available, so it is a mistake to swallow fluoride and expose all the tissues of the body to its harmful effects.
  7. Human breast milk is very low in fluoride. Breast milk averages only 0.007 ppm F (NRC, 2006). Even in areas with high fluoride levels, nursing children receive only a small fraction of the mother’s fluoride intake, ensuring that the sensitive brains and bodies of breast-fed infants are protected from the developmental effects of this toxin. In contrast, a bottle-fed baby in a fluoridated area (0.7-1.2 ppm F) gets up to 200 times more fluoride than a breast-fed baby, resulting in an increased risk of dental fluorosis and other adverse effects.
  8. Once fluoride is added to water, there is no way to control who gets the drug or how much is ingested. No medical follow-up or monitoring of fluoride levels in citizens’ urine or bones is being carried-out by health agencies and so no record is being kept of adverse effects or daily or accumulated exposures.
  9. Certain subgroups are particularly affected by fluoridation. People vary considerably in their sensitivity to any toxic substance, including fluoride. Infants, the elderly, diabetics, those with poor nutrition (e.g. low calcium and low iodine), and those with kidney disease are especially vulnerable to specific adverse effects of fluoride. Black and Mexican-Americans have a higher prevalence of the more severe forms of dental fluorosis (see Table 23, CDC, 2005).
  10. Fluoridation discriminates against those with low incomes. People on low incomes are least able to afford avoidance measures (reverse osmosis or bottled water), or treatment of dental fluorosis (see Point 3) and other fluoride-related ailments (see Point 5).

In conclusion, thank you Harry I. Davidson for our coincidental meeting and our discussion about fluoride and its dangers.  For some reason, I believed you, and did not write you off as some crazy, old guy.  Once again, thanks Harry I. Davidson.  You just never know who you will meet in this world and what you will learn.


1 Dangers of Fluoride

Top Ten Arguments Against Water Fluoridation

Hidden Danger in Your Drinking Water and Toothpaste

Fluoride and Fluoridated Water’s Link to Thyroid Disease, By Mary Shomon, About.comGuide

Government recommends lowering fluoride levels in U.S. drinking water, By Saundra Young, CNN

This is a follow-up to my blog called Taking control during a long-term EEG . . . .  Read on if you want to know what life is like when your child is first diagnosed with epilepsy.  In my previous post I described our experience with long-term video EEG’s and sometimes you need to follow your instincts.

As I mentioned in my previous post regarding epilepsy, we finally had captured my son’s seizures on a video EEG, and the epitologist determined that the seizures were coming from the left frontal part of the brain.  With this information, we hoped that it would guide the epitologist with what medications could be effectively used.  They also knew that the seizures started out as Simple Partial seizures but on occasion would change to a Complex Partial Seizure.

At the time I thought we had a big win, but then I found out that numerous anti-epileptic drugs were approved with indications for simple partial seizures, but no specific drug recommended.  You can imagine my disappointment.  We were back in the trial and error process with the medications.

For the next three years my son was prescribed numerous antiepileptic drugs.  There was this constant process of weaning him off one drug and slowly building up another.  Some of the drugs included:  Topomax, Lamictal, Keppra, and Tegretol.  The drugs were scary because of the potential side effects, which is the reason they are very careful about putting you on a medication.  Sometimes when we were choosing which medication to try next, the deciding factor was to choose the medication with the least dangerous possible side effect.

During that three years there was a nine month stretch of time that my son was on no medications.  It was my decision because none of the medications were working.  As I may have mentioned before, I really didn’t like using all of these medications.  Since the medications weren’t helping I decided we needed to take a break from them.  It was also a chance to see if the medications were actually causing some of the seizures.  Over that nine months nothing happened.  He continued to have seizures.  They were no worse or no better without medication.  After the nine months our neurologist made one more suggestion and we went back on a anti-epileptic seizure medication.

As you can guess this drug did not have any positive effect and my son’s epilepsy was classified as irretractable epilepsy, also called refactory epilepsy. Irretractable epilepsy is defined as having seizures that do not respond to medications. Thirty percent of people with epilepsy have these kinds of seizures.

At that point the neurologist suggested that we consider getting an implanted vagal nerve stimulator (VNS).  The VNS was approved by the FDA in 1997 in combination with seizure medication for partial epilepsy in adults and adolescents.  The Epilepsy Foundation provides the following information about the VNS:

Vagus nerve stimulation (VNS) is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker.  It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck.

The vagus nerve is part of the autonomic nervous system, which controls functions of the body that are not under voluntary control, such as the heart rate. The vagus nerve passes through the neck as it travels between the chest and abdomen and the lower part of the brain.

Cyberonics was the manufacturer of the VNS that my son has implanted.  The following information is provided by Cyberonics:

The VNS is implanted via surgery.  The device is implanted under the skin on the left side of the chest.  A second incision is made on the neck where the wire from the stimulator is wound around the vagus nerve on the left side of the neck.  The brain is not involved in the surgery.

Picture provided by Cyperonics at

The device is a flat, round battery, about the size of a silver dollar—that is, about an inch and a half (4 cm) across—and 10 to 13 millimeters thick.  Newer models may be somewhat smaller.

Picture provided by Cyperonics at

The neurologist programs the strength and timing of the impulses according to each patient’s individual needs. The settings can be programmed and changed without entering the body, just by using a programming wand connected to a laptop computer.

For all patients, the device is programmed to go on for a certain period (for example, 7 seconds or 30 seconds) and then to go off for another period (for example, 14 seconds or 5 minutes). The device runs continuously, usually with 30 seconds of stimulation alternating with 5 minutes of no stimulation. The patient is usually not aware that it’s operating.

Holding a special magnet near the implanted device causes the device to become active outside of the programmed interval. For people with warnings (auras) before their seizures, activating the stimulator with the magnet when the warning occurs may help to stop the seizure. Many patients without auras also experience improved seizure control, however.

The battery for the stimulator lasts approximately 5-10 years.

It was a big decision to go down this path.  I did a lot of research.  At the time it had been on the market seven years.  We were very anxious about the decision because we were putting a medical device inside my son’s body with no guarantees that it would work.  Our neurologist indicated my son was ideal for this because he was usually conscious when he had his seizures.  Before we made our finally decision we had an opportunity to meet with a person who already had a VNS.  This was really nice because we could hear her personal experience, see where the incisions were made, and  see how it operated.

As a result of meeting with her, she demonstrated how the VNS affected her voice when it went off.  The vagal nerve is located right by the voice box.  When it is activated it causes the voice box to vibrate if you are talking.  As you get used to it there is no sensation.  When we first got it slightly hurt, no more than a small sore throat.  As the body adjusted to it the sensation goes away.  Plus they slowly increase the current over time so that your body can acclimate to it.

They give you a magnet which you use to activate the device.  When you swipe the magnet across the device  it will activate the VNS but at a slightly higher rate than when it normally goes off every five minutes.  My son uses this if he has the sensation of seizure happening.

In our checkups the neurologist always does a check of the device.  He takes this device and just holds it over the VNS and the two devices talk to each other.  The neurologist can adjust setting and look at statistics about its usage.

Since my son had the VNS implanted he has not had any more tonic clonic seizures (formerly known as grand mal), and he no longer had these flutter seizures where they would rapidly start and stop.  Unfortunately, his most common seizure continued to happen.  These seizures were later determined to be myclonic seizures which consisted of a unsually tugging of the eye, and occasionally affecting other parts of his face and body.  These continued happening frequently, as much as five or six times a day.

My son now has had the implant for seven years, which is close to the time when the battery will need to be replaced.  We will decide if we will be replacing it.  There are times my son wishes he didn’t have it.  He doesn’t like the bump on his chest. Plus he can’t participate in any contact sports.  I suspect we will want them to turn if off and we will see what happens.  If he no longer has those seizures we may keep the VNS off or have it removed.

To Be Continued . . .

That day

Posted: September 11, 2011 in Indulgent Commentary
Tags: ,

The day of  September 11, 2001 is forever branded in my mind.  Even today, I remember the events as they unfolded.  Though I was far from the people and the locations that were destroyed, a piece of me will never be the same, which is probably true for every American.

Flight 11

The day had started just like any other day.  At the time I was a technology consultant working in Ohio.  That morning I did not go to work because I had a doctor appointment and was taking the rest of the day off.  After my appointment I heard the first news about the attack on the World Trade Center.

As soon as I got home I was glued to the TV, mesmerized with the scene before me of the first pictures of the World Trade Center.  First there was rumors about bombs and missiles.  I think our thoughts went there because the World Trade Center had been bombed by terrorists just a few years before in 1993.   I remember the news stories about how it went off in a basement of the parking garage and how the people made their way out of the smoke-filled building.

I was really in shock.  As I watched the Special Report there were a few witness reports about a plane hitting the World Trade Center, soon to be corroborated by a news source. I  wondered how it was possible for a plane to accidentally crash into the building. Obviously, I knew it was possible, but how was it possible with all the flight restrictions around a city, especially around a city like New York.  The news broadcasters were talking about the number of workers in the building.  In shock themselves they described the immensity of the damage to the structure where the plane had smashed into the it.

The live video was being shown by Good Morning America. Smoke and fire was pouring from the building with these huge gaping holes through the two sides of the building.  I knew there was no way anyone on those floors could survive.  I wondered about the floors above the crash site.  Were they alive?  Could they get out?  Based on the damage, it didn’t look like they would be able to get past the damaged area to go down.  There was the roof.  Perhaps they could rescue people by airlift, but there was so much smoke.

Flight 175

Based on this reporting, it wasn’t only me that was confused.  As I watched the scene on TV, suddenly I saw the dark shape of the tilted airplane curve around the building and then the gush of fire, debris aflame, followed by an enormous blast of fire boiling over the building.  An eye-witness who was being interviewed exclaimed, “Oh my god.  Oh my god.”  While all of us were watching the scene, the second plane hit the second building.  This was live, real-time video, and I was shocked about what I had just seen.  It was that moment that I, and probably everyone in the rest of the country, realized this was an attack.  I don’t think my thoughts were much different from anyone else in this country.   Shortly after, there was the realization that it was a large plane, like a commercial jet.  It was plausible for a plane to accidentally hit one building.  But not two planes hitting  two buildings within minutes of each other.

The reporters were showing the live video over and over again.  We all watched.  An airplane hit the building and the buildings were on fire.  We all watched, quite helpless, as New York City was being attacked.  Everyone was in shock. There were soon discussions about a plane being hijacked.  Government offices  were being evacuated and the military had their jets in the air.

The Pentagon

At that moment I decided that none of this was a good sign and who knew what else was going to happen.  Later they reported that an Arabic group was claiming responsibility for the attack.  This really wasn’t surprising.  There had been several attacks abroad and numerous stories of attempted attacks from some radicals in the Middle East.  At the time I really didn’t understand why we were hated.  Was it over oil?  Or Israel?  I didn’t know.  Later this Arabic group denied any involvement.  As I was contemplating all of this, there soon were reports of clouds of smoke in Washington D.C. and that there was fire at the Pentagon.

With all of this live reporting as the acts of terrorism were happening, I grew more and more anxious.  There was no doubt that our country was being attacked, and the attack was deliberately planned and executed.  First the World Trade Centers in New York, and then another plane at the Pentagon in Washington D.C.  I don’t mean to belittle the moment or to be disrespectful, but it didn’t seem real.  It felt very odd to be watching the TV, helpless, and seeing all of the evidence of these horrific attacks.  Witnesses described the people in the streets of New York who were stopped, doing nothing and just staring at the buildings with the billowing smoke coming out of them.  Clearly, this whole country was in shock.  Soon they announced that the government was ordering all air traffic across the country to be stopped. The government was trying to prevent another attack.  Potential target areas were taking precautions.  The White House was evacuated.  Even the Sears Tower in Chicago was closed.  It was obvious it wasn’t just me that was afraid.  The whole nation was in disbelief.

The South Tower

As the news broadcasters continued their discussion I could see debris falling down the side of the building and all of a sudden the live video showed one of the World Trade Centers collapsing.  With waves of smoke, it looked as if it imploded with billowing smoke and dust being sucked down with the building.  Soon the dust in slow motion surrounded the other buildings in the area.  We saw it live on TV.  It took only a few seconds and the building was gone.

To this day if I watch that video it still makes me gasp.  It was so unexpected.  I don’t think anyone thought the building would go down.  It was the South Tower and a reporter said the people in the streets were in panic, trying to flee away from the area.  The news broadcaster was stunned and was momentarily silent.  I could feel his grief.  The only other moment in my life that I saw such emotion from a broadcaster was when Walter Cronkite described the assassination of John F. Kennedy.  Everyone’s thoughts immediately went to the enormous number of lost lives in those few seconds.  And then the first tower, barely discernible, stood  all alone with billowing gray dust below and black boiling smoke at its top.

The North Tower

Shortly after the first tower collapsed it was reported that the remaining tower was leaning.  I could tell the top of the building was deteriorating from the fires.  The gaping holes were no longer distinguishable.  And then I saw the North Tower, with a sudden burst of fire,  follow its predecessor, collapsing to the ground.  Shards of steel could be seen crumpling under the devastating weight of the building.  Streams of dust and debris arched out like the shape of the trail of fireworks.  There are no words to describe how I felt at that moment.  One dreadful event happening one after the other with no moments spared.  All happening within an hour and a half.


My immediate thought was that I needed to pick up my two-year old child from daycare.  I wanted to make sure he was safe.  I wanted him with me.  I had this image in my head like in those disaster movies.  I saw myself in the midst of an apocalyptic tragedy, desperately trying to get to my son.  I decided this image was not going to be me.   I know this all may sound silly, but that was my instinct.  I was so happy to get to my son.  When I picked him up, I stood there a moment just hugging him.  At the time, my husband was in Africa.  So it was just the two of us together.  I knew that our life here in America was going to drastically change and it would not be the same world for my son.

My instincts also told me that I needed to be prepared.  After I picked up my son I immediately filled my car with gas.  I knew that if I needed to get away I would need fuel.  Luckily this was very early in the day, because by the afternoon the gas prices were jacked up.  The gas was $1.59 a gallon when I got it.  By the end of the day the prices had went up to $5.59 a gallon.  It was just another uncouth, despicable event that reinforced how much I hate the oil industry.

My son and I returned home and once again sat watching the TV.  Soon pictures were shown of areas near the World Trade Centers, laden with heavy layers of dust.  People were covering their mouths with a cloth so they could breathe.  The dust swirled like a heavy fog.  The streets looked nothing like New York City.  Instead they appeared as a foreign world with layers of dirt.  People wandered with their ghost-like faces smothered with dust from the Twin Towers. Some were crying and some totally silent as if caught it a daze.

Hijacked Planes

As news was announced that at least one of the hijacked planes came from Boston heading for Los Angeles, I began to think about the people on those planes.  It was early in the morning which is always a busy time for business travelers.  I thought about those families that were wondering if the hijacked plane was the one carrying their loved one.  If it were myself, I would be frantically trying to call them, desperate to find out more information.  I don’t know which would be worse, not knowing or knowing.

Thoughts of my loved ones creeped into my mind.  I had it in my head that if things didn’t go well where we lived, I would pack up the car and head to my parents.  It was really absurd.  My parents lived about 500 miles away in another state.  I know it was silly, but that was my plan.  I don’t even know what I was expecting to happen.  I guess I saw New York City being attacked and here I was right in the middle of another city.  I just didn’t trust the situation.

Soon the FAA was reporting there are still two airplanes unaccounted for, even though all flights were grounded throughout the United States.  Someone from Cleveland reported that a plane made an emergency landing as a result of a bomb threat.  This was frightening to think about.  What target were they aimed for?  Is it only New York or Washington D.C. that were vulnerable?  Could it happen in Chicago, or Los Angeles, or Houston?  All were at risk.   I knew that there was no city that was safe.  It was obvious the engineers of this plan of devastation did this with the intent to cause terror in all of the American people.  This wasn’t the front lines of a war zone.  This was terror that we felt in our very homes.  They wanted to touch each one of us.  They wanted to show us that we were helpless and they held the power.  They showed us that we were vulnerable.  They wanted us to be afraid, and we were.

Those who survived

As I continued to watch the news, more video was coming in.  The videos were of areas near the Twin Towers, both as they collapsed and revealing the trauma after they fell.  They showed all of the people running away from the scene.  Police officers, business people, shoppers, people choking from the dust, firemen, tourists, men and women rapidly moved away from the falling buildings.  All of them were trying to outrun the boiling dust as it advanced toward them.  Many of the first-responders were covered in dust and debris.  People held their handkerchiefs and cloth over their mouths to help them breath as they escaped this living dust. All of them had this look of shock and fear on their faces.  Many wept in sorrow.  I clearly remember a scene of a police office walking in this blanket of dust and fine debris in the air.  No one else around him, just the gray of the dust with shadows here and there.

Once in a while an ambulance would pass or we would see a group of medical personnel.  Sounds of sirens could be heard and we could see the red fire trucks lined up in the street.  Soon there became reports of people who were injured and report of people who were safe. Horrific reports came out about people who jumped from the buildings and fell to their deaths.   In New York the people continued to stream away from the ruins, and behind them the Twin Towers of the World Trade Center stood no more.

Messages came from all over the world expressing their sorrow.  And sadly to say there were demonstrations of celebration from those that were enemies of the United States.  Messages of recovery came out from representatives of the government including New York’s governor.

As time continued there were more pictures of the place where the World Trade Centers once stood.  We saw the devastation, covered in soot and dirt with piles and piles of debris.

Flight 93

Slowly there was news about which specific flights were involved in the attacks that day, along with their places of departure and destination, which they never got to.  As the broadcaster watched lines and lines of people walking away from the damaged areas, it was announced that there was a report of a United Airplane that had crashed.  Today we now know this story very well. We have now seen the transcripts the passenger’s telephone calls as this occurred, as well as any background noise and talking from within the plane. We know about the brave individuals who fought back against the hijackers.  In the end the plan crashed in Pennsylvania.


On that day the skies were clear blue with bright sunshine except over Manhattan which was engulfed in dust.  It being one of two wounded cities, along with a nation of traumatized hearts.  The landscape of New York no longer includes the majestic twin towers of the World Trade Center.  For days and weeks this was in our news.  We saw the photos of the rescue attempts at the site, now referred to as Ground Zero.  The images of that day and the days to follow will remain with me forever.  I still feel the mixed emotions I felt as the news was reported.  There was shock and fear.  There was horror and sorrow.  And over time there has been anger. It still tears at my heart when I hear the stories from people who were directly touched by that day. All of us in America will be forever affected and will remember September 11, 2001.

The following links have more information about the events of 9/11.

September 11 Television Archive
Producer: ABC 7, Washington, D.C.
Production Company: ABC 7, Washington, D.C.

Tribute in Music: ‘Ten Years On
By mfrazier

9/11 Memorial

Make History
A collection of events told through the eyes of those who experienced it.