Vacuuming -

These economic times - three dogs - five humans - I've been doing a lot of vacuuming lately. Vacuuming has become almost therapeutic for me. I always laughed when my husband would be plowing the snow or power washing the deck with that focused and preoccupied look on his face. As I looked up and saw my image in the mirror I saw that same look, that same preoccupation - and it was great. I realized as I was cleaning that I was really removing the dust from my mind.

I think at these mindless times we do our best thinking, our best reflecting and our best brain storming. So many thoughts went through my mind today. So many ideas and images.

I thought of the word "Autism" I thought of all the amazing people I speak to and correspond with every day. Then I thought - how misunderstood that word "Autism" really is. It truly is a spectrum, a broad sequence or range of related qualities, ideas or activities. An umbrella term for so many subgroups.

The perception by most people about autism is an extreme and hopeless childhood illness. Unfortunately, for some it is devastating and keeps them locked in a world that until recently has been a mystery. For them it is a prison. However, the majority of the people I speak to do not find it hopeless and are not on the extreme end of the spectrum. One of the subgroups in autism is Asperger's Syndrome. Although autism starts in childhood it is not only a childhood disorder. The autism or aspergers does not go away. It is accepted and reshaped and it is in the mind and hearts of many adults who suffered as children by the lack of support and understanding in an era of ignorance. The many adults I speak to like to refer to themselves as Aspies. Aspies are fabulous. Aspies see a different spin on the world, a spin that makes them some of the most creative, intelligent, successful and caring people I have the pleasure to know.

So, I kept vacuuming.

Now, I was thinking of a guest I had on my show The Coffee Klatch, Taylor Morris. I was so moved and touched by her and her mother and found myself truly able to look at my daughter and myself in a completely different light. As I vacuumed it seemed like a whole new language came to me and a dialogue played in my head.

So, I kept vacuuming.

I began to look at what I once saw as a curse - to be a gift. I saw that if used properly with self acceptance and understanding this "gift", could be channeled and cultivated and lead to an amazing journey through life.

That dialogue that had been going through my head, I believe, once spoken, may have changed the course of our lives and true understanding of acceptance.

I think I'll keep vacuuming.

Mental Illness - Its Not All In Your Head

Many people diagnosed with mental illnesses seek the help of

psychiatrists and other mental health care providers. It seems

the obvious treatment. What many people with depression,

anxiety and phobias, do not do, is seek out consultations to

find a possible medical cause for their symptoms.

There are many endocrine,neurological and cardiac diseases

that present symptoms of depression, anxiety and even

intermittent bouts of rage. Proper treatment of these disorders

can reduce and often times resolve the psychiatric symptoms.

Some patients will benefit from both psychiatric and medical

interventions. This is not to say that every person or child with a

mental illness is misdiagnosed, but many are.

The endocrine system, is a complex group of glands. These

glands make hormones which help to control activities in

your body. Along with growth, metabolism,reproduction and

development, hormones control the way you respond to your

surroundings. Diseases that alter the hypothalamic

-pituitary-axis may produce anxiety-like states. It important

to differentiate between medically induced and primary

anxiety disorders. Treatment with psychotropic medications

alone may not significantly improve the emotional symptoms

and may, in some cases, contribute to the hormonal

imbalances.

 Anxiety frequently occurs in endocrine patients with adrenal

dysfunction, Cushing's Disease, Carcinoid syndrome,

hyperparathyroidism, pseudohyperparathyroidism, hyperglycemia,

hyperinsulinemia, pancreatic tumors, pheochromocytoma and

thyroid diseases including hyperthyroidism, hypothyroidism

and thyroiditis. These diseases can be the organic basis for

an anxiety disorder and with proper diagnosis and

treatment can improve the quality of life of many

anxiety sufferers.

Psychoneuroendocrinology: The Scientific Basis of Clinical Practice

Polycystic Ovarian Syndrome is another very common

endocrine disorder which, in a large percentage of patients,

causes anxiety and depressive states. PCOS is caused by

irregular levels of estrogen, progesterone and testosterone.

It is estimated that 1 in 10 women have PCOS. Women with

PCOS may suffer from acne, excessive hair growth, loss of

hair, infertility, loss of menses, diabetes and weight gain.

Some data reports that almost 80% of these woman

suffer from anxiety, depression and other mood disorders.

Treatment with birth control pills as well as medications to

regulate insulin along with proper diet and exercise can

significantly improve the physical and emotional

symptoms of this syndrome.

Along the way you may have what is referred to as an

incidental finding. These unanticipated findings in the

course of testing or medical care can hold they key to

some anxious states. An incidentaloma is a tumor (-oma)

found by coincidence (incidental) without clinical

symptoms or suspicion. In our case it was a pituitary tumor,

a microadenoma. Cushings Syndrome -an endocrine disease

known to cause anxiety and phobic states -is suspected, as well

as Polycystic Ovarian Syndrome.

Although I have primarily focused on the endocrine -

anxiety connection, the list of diseases, disorders, syndromes,

and medications that can contribute to or cause anxiety and

depression is significant.

Treating depressive and anxiety disorders, in some cases,

needs to be a joint effort with a team of psychiatric as well

as specializing physicians working in harmony.

It has been my experience as a parent of a child with a

severe anxiety disorder,that what you see is not always what

you get. Proper diagnosis is the key. Finding the origin of a

mental illness is often like finding a needle in a haystack.

It took seven years and four endocrinologists before the

proper treatment was initiated, a lot of time lost.

Article: http://www.aolhealth.com/condition-center/chronic-pain/autoimmune-diseases-symptoms?icid=main|main|dl3|link5|http%3A%2F%2Fwww.aolhealth.com%2Fcondition-center%2Fchronic-pain%2Fautoimmune-diseases-symptoms

References:

http://www.drrichardhall.com/anxiety.htm

The Silence is Deafening

The organic basis of anxiety disorders in children and adolescents, this has become my focus.

I have spent a lot of time reading, researching and interviewing on this subject.

A few months ago I was approached about contributing to an advocacy book for special needs children. When I first decided to take this project on I had no idea what to expect. I had no idea what direction it would take me in or what if anything I would contribute.

It started with a few articles I had written that were read and picked up by bloggers and special needs websites. Soon, I began meeting a lot of people that were very passionate about these children and the struggles of their families. They are an eclectic group with different perspectives and theories on the causes of emotional disorders in children. Some have directed their focus on the environmental impact such as food additives, pollution and poor diet and exercise. Others have focused on vaccines and their role in autism. Videos games, music videos and present day stress is considered in learning disabilities. The genetic component is universally accepted. All have done their research and have educated themselves and others on the possible cause of this dysregulation in children. I believe there is validity in all.

I remain steadfast in my belief that some, not all, of these children's disorders are secondary to a primary medical condition. I began networking in many different venues to seek out parents, caregivers, nurses, adults who had been diagnosed with anxiety or depression as children as well as mental healthcare providers. The response was overwhelming. Within the first week I received over 80 responses to my request for people to be interviewed. I have spent weeks emailing and screening the responses.

To my surprise, I have had a tremendous response from psychologists, psychiatrists and otherhealthcare professionals. The internet has been an amazing tool for them to share their findings, research articles, case studies and opinions with me. Daily communication through text messaging and social media forums has been invaluable.

What became a striking similarity to me was the fact that none of the parents or adults I have been in communication with were given a thorough medical evaluation before being diagnosed and treated. A routine check-up and often times a blood panel to check liver and kidney function was performed but nothing further. Although a neurological evaluation was sometimes recommended, not one of the people I have spoken with were referred for an endocrine evaluation. It is important to add that the majority of people I have spoken with have either Cushing's Syndrome, Polycystic Ovarian Syndrome or another endocrine disorder. One out of every ten women has PCOS. Eighty percent of woman with PCOS have now or had as a child, some form of anxiety or depression. That is a very large population.

A week ago I decided to ask the mental healthcare providers I have been communicating with to let me know what type of endocrine testing they have recommended for the girls they treat for anxiety related illnesses.

I have not received one response.

Sometimes silence is deafening.

The Isolation of Families With Mental Illness

I can't think of anything more painful or more heart wrenching than that of the day to day life of a parent of a child with a serious mental illness. This is not to diminish the pain of parents of children with medical illnesses or of parents who have lost a child, but it is different. The isolation is palpable. The acceptance and sympathy is not universal. There is still, in this day and age, shame and the perception of failure. Yes, there are wonderful support groups and caring and knowledgeable doctors, but at the end of the day parents of children with mental illness are alone. Marriages are tested, siblings are adversely affected and families are held hostage by the disorders. Life becomes a constant calendar of doctor, psychiatrist and therapy appointments. Many families find themselves in financial ruin.

It seems there is always one step forward and two steps back. There is the medication roller coaster which once on, seems impossible to get off. There is the guilt and sleepless nights worrying if the decision to medicate is the right one and what the side effects may be, not only now, but in the future.

Here is an article posted today in the Los Angeles Times

Parents Cope With Schizophrenic Child

Mentioned in this article is the lack of services available for these children and their parents. Respite care is not offered, long term hospitalization is not offered and many specializing psychiatrists do not take insurance. It truly is a sad state of affairs when our healthcare system cannot accommodate these children and their families.

Having a child with a mental illness is a challenging and difficult experience. It takes a strong and special parent to deal with the daily uncertainty.

Being the parent of a child with a mental illness can also be the most rewarding and life altering. Little successes become major triumphs. Priorities become clear. Parents develop a bond that most spouses will never know. There is true understanding of unconditional love. And when the war is won, there is no better victory.

The road for these families is long but the reward at the end is great.

Prenatal Stress and The Inception of Childhood Anxiety

Can prenatal stress cause anxiety disorders in offspring?

Recent studies show it can:

 Abstract Pregnancy is associated with major physiological changes and adaptation to these changes is crucial for normal fetal development. Heightened emotional stress during pregnancy may interfere with the necessary adaptation and lead to dysregulation of the two major stress response systems: the Hypothalamic–Pituitary–Adrenal (HPA) Axis and the Autonomic Nervous System (ANS). Negative effects on the fetus of such maladaptation have been documented in both animals and humans and range from poor birth outcomes to negative impacts on neurodevelopment, as well as long term emotional and behavioural disturbances..... Aaron Levin

"Aberrations in fetal experience in a subset of persons, whether caused by stress, infections, or famine, alter the neurodevelopment of the fetus," explained epidemiologist and developmental psychologist  Stephen Buka, Sc.D., a professor of community health at Brown University Medical School. "That should be considered established.".... Stephen Buka

"When you connect what we know about neuroanatomy with the pathophysiology of schizophrenia, it seems quite logical and is supported by the evidence that some portion of those brain abnormalities in adults have their origins early in fetal development," said Buka.

It is also important to explore the possibility of variable periods of vulnerability throughout gestation.

The data above shows the significance of stress at certain periods of gestation. Other similar findings of anxiety and behavioral disorders in offspring have been documented during periods of war, famine and other catastophic events.

It is then plausible that extreme prenatal stress, from any source, not only catastrophic events, can cause dysregulation of the HPA or ANS in offspring?

Below I site just a few of the many studies connecting prenatal stress to long term mental illness in offspring.

Prenatal stress and infant affective reactivity at five months of age.

http://www.ncbi.nlm.nih.gov/pubmed/21194854 

Depression during pregnancy: is the developmental impact earlier in boys? A prospective case-control study.

http://www.ncbi.nlm.nih.gov/pubmed/21208585 

Prenatal stress and neurodevelopment of the child: focus on the HPA axis and role of the placenta.

http://www.ncbi.nlm.nih.gov/pubmed/19546565

Effects of antenatal stress and anxiety

http://bjp.rcpsych.org/cgi/content/full/180/5/389 

Can prenatal stress be a precursor to endocrine disorders later in life?

Can prenatal stress alter cortisol levels and create panic attacks, anxiety and phobias?

I believe it can.

Conversely, it has been hypothesized that low levels of maternal prenatal stress may actually have an adaptive value for the offspring.

Parents should be educated about the negative effects of prenatal stress. Care should be taken to provide support and counseling for these woman especially in the first trimester http://www.ncbi.nlm.nih.gov/pubmed/21208585

Medical Historian Key Role in Parenting A Special Needs Child

When I worked at the hospital, I was repeatedly told that the H & P (history and physical) was key to proper diagnosis and treatment. Having an accurate and up to date medical history can be the difference between life and death in an emergency room situation. A National Electronic Medical Records Database is essential to ensuring quality health care and should be part of our new healthcare plan.

Being the best medical historian you can be for your special needs child is paramount.

Having a child with special needs often creates a busy and stressful environment conducive to forgetting important information which is key to proper diagnosis and treatment. Keeping a journal and charting are two good ways to ensure that your child's history is correct.

Another important consideration in keeping detailed accurate records is the unlikely event of the absence of the primary caregiver.

Parents do not have to wait for a formal diagnosis to begin keeping a record of physical and emotional abnormalities. Journaling symptoms to discuss with your pediatrician or mental healthcare provider does not need to be specifically formatted. It can be as simple as jotting down observations and dates in a plain notebook or calender or keeping a journal on your PC. In the latter, I would recommend printing out hard copies for your file in the event of a computer crash.

Once a formal diagnosis is made, I feel it important to make a weekly (or during times of medication trials, daily) entry to document your child's progress or regression. As most parents of a special needs child are aware, symptoms and behaviors wax and wane and can soon be forgotten. I cannot stress enough the importance of daily documenting during times of medication trials. These are very hard times for the child as well as the caregiver. Recording the medication, form (brand or generic), dosage and times given, as well as any side effects is crucial. Adjustments are often made and it is key to have a point of reference.

As your child's disorder progresses changes are inevitably going to have to be made. Sometimes the change may be in the choice of treating physician or in the addition of one. Here is where the history is most important, this is where the H & P, as you give it, will decide treatment.

Charting is very popular and useful. Psychiatrists and therapists treating school age children will give forms for your child's teacher to fill out and return. The information is on a scale basis and requests specific information such as attention span, mood, social ability, grades as well as other important information. Always keep a copy for your file.

Keeping an accurate and up to date file for your child will make your life easier and alleviate one of the many stresses of doctor visits. Be sure to get copies of all reports, blood work, scans and other diagnostic testing for your personal file.

Remember, independence is not far away, your child will eventually grow up and move out.  Having a history of medications that were effective and those that caused intolerable side effects will be helpful as they begin to maintain their own mental health management.

You can find sample forms, logs and other record keeping ideas online.

Keep it simple, but get it done. It is key to parenting the special needs child.