November - Epilepsy Awareness Month

November is National Epilepsy Awareness Month. Epilepsy affects about 2 million people in the United States and is characterized by recurrent, unprovoked seizures. Delayed recognition of these seizures and inadequate treatment increase the risk for additional seizures, disability, decreased health-related quality of life and, in rare instances, death. Although epilepsy can occur at any age, the condition is more likely to begin among children less than 2 years of age and adults older than 65 years. As do many who live with other chronic disorders, those with epilepsy often face challenges related to managing epilepsy treatment, symptoms, disability, lifestyle limitations, emotional stress, and stigma.

Socialized Medicine

What a rotten day this turned out for me after hearing the health care reform legislation had been passed. What the hell is wrong with these politicians? Every single one of those Democraps. Where does Nancy Pelosi and her ilks find the nerve to ignore the American people? How is it possible that they just don't care that the majority have spoken?

When this socialized medicine becomes law, what's going to happen to my handicapped child then? What's going to happen when the government will be the deciding factor if my handicapped child will be eligible to live? What will happen when the government decides that my child with disabilities is not a productive part of this society, so they will ration her care to the point that she will not survive the little care that she receives? Because her health is so fragile, what will happen when the government will decide that they can't afford to give her an ultrasound for having a simple tummy ache? But in fact, a simple tummy ache for her could be life threatening. My daughter cannot take generic anti-convulsant medication. What will happen to her when the government will take away our Brand name medication which has been controlling the life threatening convulsive epilepsy that she has? Generic medicine will surely kill her. The government will kill her. They will decide whether my daughter should live or die. And they could care less either way, that's obvious by the decision they've made not to listen to the American people.

What can I do? Who can I rely on? Who can I trust? We're at the mercy of these politicians. The doctor's will also have their hands tied by these morons. My daughter will surely die under this government controlled socialized medicine. That I know is certain. If that isn't enough to fill me with disdain, I don't know what is. If someone can tell me otherwise...I'm all ears.
Frankly.....politics is bullshit.

Where Are The Parents?

A question was asked by an official as to why there weren't more parents of Special Needs children involved in the local PTA and other issues. Sue Stuyvesant, mother to her special needs daughter gives a poignant reply:

Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.
They are busy, trying to survive.

That's about it in a nutshell for me as well.

Child With Epilepsy Goes To Hospital After Getting Swine Flu Shot Without Parents OK

School nurses mistakenly gave the swine flu vaccine to two students who didn't sign up for it - including a Brooklyn girl with epilepsy who wound up in the hospital.

"I was outraged," Naomi Troy, 26, told the Daily News after her 6-year-old daughter, Nikiyah Torres-Pierre, had a possible allergic reaction to the shot.

Officials at Public School 335 in Crown Heights called an ambulance to take Nikiyah to SUNY Downstate Medical Center when she fell ill following the arm jab.

...City officials have stressed the vaccine is safe and urged parents to sign up for it - though less than half have sent in permission slips.

Troy was waiting for advice from her family doctor on whether Nikiyah should get the shot since she takes medicine to control her epilepsy.

...Troy said the nurse - a Department of Health employee - tried to get her to sign a consent form, after the fact.

More...

November - Epilepsy Awareness

November is the month of Epilepsy Awareness. I do wish that more people were aware of that. My daughter has epilepsy. Although we're fortunate she doesn't have 100 a day like so many children. But when she does have an episode, it's a grand mal seizure. The kind that brings me to my knees and takes my breath away. As a parent with a child with epilepsy, it's the most helpless feeling when there isn't anything we can do to make it better. It's maddening that we can't comfort our children while they scream during a seizure.

Perhaps one day they will find a cure for epilepsy. Maybe one day there will be more awareness.

CURE Epilepsy Facts:

* Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide.

* In two-thirds of patients diagnosed with epilepsy, the cause is unknown.

*Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.

*In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.

*The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal.

*It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.

*The mortality rate among people with epilepsy is two to three times higher than the general population and the risk of sudden death is twenty-four times greater.

*Recurring seizures are also a burden for those living with brain tumors and other disorders such as cerebral palsy, mental retardation, autism, Alzheimer’s disease, stroke, multiple sclerosis, tuberous sclerosis, and a variety of genetic syndromes.

*There is a strong association between epilepsy and depression: more than one of every three persons with epilepsy will also be affected by depression, and people with a history of depression have a higher risk of developing epilepsy.

*Historically, epilepsy research has been under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.

*For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence.

Epilepsy: The Forgotten Disease

My daughter has epilepsy. I can handle all the other disabilities she has. But it's the seizures that brings me to my knees and shatters every beat of my heart. Grand mal seizures that will cause her body to stiffen and her eyes will roll up into the back of her head. When she was younger she would have seizures that caused her to hold her breath til her lips turned blue and her fingertips purple. Epilepsy is a bitch. Really.

60 Minutes had an interesting story on Epilepsy. David Axelrod has a daughter with epilepsy which is controlled at this time. But with 28 years of hell, I know of all too well too.

More Americans are suffering from epilepsy than Parkinson's, cerebral palsy and multiple sclerosis combined.

Watch CBS News Videos Online

Brand Name Drugs vs. Generic Drugs (video)

I received an Epilepsy newsletter that I found pretty interesting. There was a segment on the Today Show (video) referring to Brand name drugs vs. Generic drugs and the consequences of using generic.

Awhile back our pharmacy/insurance gave us the generic brand anti-convulsant Tegretol for my daughter's seizures. I took notice of the change but didn't think anything of it. Until she started seizing. Thank God her seizures were petit mals and not grand mals. She just had the eye twitching, staring, etc. Course that scared the hell out of me anyway, so we immediately got her back on the brand name. Even to this day, our pharmacy/insurance will still try to pull that generic stuff on us every so often so I have to call and make a fuss. Even with doctors orders that it has to be Brand name, the pharmacy will find a way to sneak in the generics.

I knew it was the generic brand that was the culprit that caused her seizures but no one (professional) ever confirmed my suspicions. No one ever questioned it either. So what I once believed to be true but no pharmacist or doctor would confirm it, is now validated! I suppose we would have never known either, unless we tried it. It's just unfortunate that no one ever warned us of the possibilities of such side effects. Just as they don't educate parents on the dangers of vaccines. But that's another story for another time. Oh well, trial and error, eh? It's just ashame our children have to be the guinea pigs in all this.

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First Do No Harm - Epilepsy Awareness Month

"Check to see if she's breathing." That's what I've been saying and doing for that last 20 years. The Hummingbird has a number of disabilities. Epilepsy being just one of many.
So....if you'd like, join me on a trip down memory lane to her first epileptic seizure.

She was nine months old and sleeping in her car seat chair when her deaf and hard of hearing teacher noticed she wasn't acting right. She was having her first grand mal seizure. DH and I took her to the emergency room and they told us nothing could be done for her (don't you just love doctors sometimes?...not). Come to learn that you can stop seizures through certain medications. She had three more grand mal seizures. I had no other choice but to start her on an anti-convulsant drug, Phenobarbital.

From nine months old to seven years we went through cocktails of drugs taking it to their maximum levels where she was lethargic, listless and falling asleep with food in her mouth. Her eyeballs would shake and quiver from side to side from being toxic on Phenobarbital. And with all of that, her seizures continued to increase. She was having a grand mal seizure everyday. Her grand mals (tonic clonic) consist of extremely hard convulsions. Her body would stiffen and she would throw her head back. Her eyes would either be fixed to the left or right or rolled back into her head. She would often hold her breath until her face turned grey, her fingernails turned blue and her lips turned purple. She would often scream with such a piercing cry, it would have me in tears. It has to be one of the worst situations for a mother to be in, when we can't do a thing for our children to stop the madness. But only to ride it out. She was slowly deteriorating and the doctors couldn't help me except to add another drug on top of the three she was already taking.

I do believe it was an Angel who sat me in front of the television set one October evening in 1997. Jim Abrahams was being interviewed about his son who also had epilepsy and an amazing treatment to control, often cure it. It's through a diet of food, of all things. It took me three years of fighting with our doctors and insurance to agree to start her on the Ketogenic diet. Although, high in fat and protein, the ketogenic diet is a way to control epilepsy. On the second day of starting the diet, the seizures stopped for eight months. It was truly amazing. However, her seizures have come back, but it's about one every six to 12 weeks. I'll take that over grand mals every single day. Along with the ketogenic diet, she's also taking medication although cut by half and at a very low dose.
She is no longer lethargic or listless. I give credit to the Ketogenic diet for giving my daughter's life back to her. She has a smile that is sure to melt your heart.

November is Epilepsy Awareness Month.

Few medical conditions have carried the mystique or generated as much controversy as epilepsy. Coping with societal challenges can be the most difficult part of having epilepsy.

November is Epilepsy Month, a time to promote awareness of epilepsy, the third most common neurological disorder, affecting approximately 2.5 million Americans. It has been estimated that 10% of the American population will experience a seizure in their lifetime. Every year there are nearly 181 thousand newly diagnosed epilepsy cases in the United States, and over 45 thousand of
these are children under 15 years of age.

Epilepsy is defined as the recurrence of two or more unprovoked
seizures requiring long-term treatment with anti-epileptic (AE)
medication.

The focus of Epilepsy Awareness Month is to make people aware of the disorder and promote tolerance and overall understanding for the condition.

Just one of those dayz....

When you have children, the journey you travel is usually very typical as they grow. You bring them home from the hospital and go through all the things that first time parents go through, which probably has you in a fog and a whirlwind of confusion for the first six weeks anyway. Thank God for Grandma's.

They grow into toddlers and that becomes yet another topsy-turvy episode in your life. You desparately try to discipline them with love as they push the very last button of self control left in your baby finger.

Ahh but alas....God is good. There is a calm, quiet time somewhere between the ages of 4-6. At least through personal experience for me anyway. You know....each kid is different, as they say.

Lest we forget....adolescence, pre-teens and the dreaded know-it-all teenager. As for us parents, through age we gain experience. Through experience comes wisdom. But heck if I know where all that wisdom of mine went when the Lady Bug managed to put me through the ringer, had my self esteem in check and she somehow became the smartest girl on this planet...or so she appointed herself to that status. And to this day, as an adult, on occasion she still thinks she knows it all. Unless of course she's in a bind. Just wait til she has her own children.

So what's my point to all this?

I was sitting here...contemplating...reflecting if you will. We have our children. We go down a typical road of raising them. They grow, become independent, self sufficient, no longer needing us for anything. Some parents may want to get on with their lives. Get to know each other again. Afterall we've devoted our lives to our children for at least 18 years. To date, travel, maybe even to fall in love all over again with each other....who knows.

So every once in a very blue moon, I will have a pity party of my own. And it's been one of those dayz. The reason being...after all these years, the other half and I don't get that chance to do what parents do as their birds leave their nest. I thought of a couple who has picked their lives back up, able to go out to dinner when they please. Have drinks with friends if they choose. Go to movies. Travel. All that good stuff. You get the point. To be free again!

But because of my Hummingbird,....I am still unable to just pick up and go out whenever I'd like. She's an adult and extremely low functioning. I've been doing this like forever now, so occasionally it can get pretty darn overwhelming and whether I care to admit or not, it can take it's toll on me. Now, don't get me wrong. She is my gift from God and I cherish every smile on her face and every twinkle in her eye. It's her smiles that helps me get through my days. And for the most part, I rarely ever if at all have these idiotic thoughts. But that doesn't mean I'm not human. And that doesn't mean I don't have my moments of breaking down.

Both of my kids are the sunshine of my life. I've been blessed with a child with extraordinary insight to life and to people and of sound mind. My other gift from God has blessed me with an abundance of knowledge on love, unconditionally.
So what are you gonna do? Life goes on, doesn't it. And I can't afford to get off this mad merry-go-round. So...I'll just kick the dust off my boots and put one foot in front of the other and continue to move forward.

In the meantime.....I'll have that drink now...........

An Alternative to Medicine

Growing up in a household where alternative medicine was practiced as another means of healing, it was just a given and I never questioned it. Course as I got older and after a few emergency room visits and a couple of surgeries, allopathic medicine was the way to go.

Until that is, I had my "Hummingbird" and all the disabilities that came with her. She is my blessing but a few of her doctors didn't seem to think so. You'd think you've heard it all, but not so until you've heard what some doctors might say about their patients with severe disabilities. They advised me to have her institutionalized because she would be a burden to us. Another doctor would not provide physical therapy because she would be in a wheel chair all her life anyway so physical therapy wouldn't improve the quality of her life. Doctors tried several different cocktails of drugs to control her epilepsy, only to push it to maximum levels and all the side effects of lethargy and listlessness that came with it. And her seizures continued to increase everyday with hard convulsions. Her doctors had no clue on what to do except to try another drug and increase what she was already taking.

If anyone believes in God or angels, I do believe One sat me in front of my televsion set one evening as I watched a program that controlled epilepsy through food. It's called the Ketogenic Diet. I had to fight tooth and nail with our doctors as they gave me every excuse in the book why my daughter wouldn't qualify for this (high fat) diet. After three years of arguing and constantly hitting a dead end with them, I finally threatened them by taking this matter to the Media....They admitted my daughter into the hospital to start the Ketogenic Diet that following Tuesday. By day two of being on the diet, her seizures stopped dead in its tracks for eight months. Although her seizures have come back, it isn't anywhere near what it was pre-diet. She was having thrashing convulsions everyday before the diet. Now she has one every 6 to 12 weeks. I can live with that. Let me say too, that I do believe that there is a purpose for allopathic medicine, just as there is for alternative medicine. She is taking a drug at a very low dose, along with the diet. And her epilepsy is well under control today.

So because of my experience with these doctors, my trust in them has dwindled just a tad. Because of my daughter's disabilities, the approach her doctors will take concerns me and I have to wonder about the lack of knowledge they have with children of disabilities or other diseases such as cancer, etc. How true it is when they call it a practice. They're literally practicing on us.

Which brings me back to my point that allopathic doctors don't always have the answers. They are afterall only human. But don't tell them that. They'd like to think they're God. Which brings me to alternative medicine, more specifically the human energy system ("life energy"). That being acupuncture. Another form of energy important to human health would be spiritural energy, or chakras.

I suppose no one can have total and complete knowledge, except One. But the fact that Eastern medicine has been practiced for more than 4,000 years and with astonishing results...frankly, I would be crazy not to listen to what they have to say. Which by the way, after understanding how it works, makes more sense to me than Western medicine. Don't get me wrong...western medicine has its place in healing too.

An interview with Richard Gerber, M.D. author of Vibrational Medicine.

"Vibrational medicine is a diagnostic and healing approach to illness using energy in various forms and frequencies. As a therapy, vibrational medicine is the application of different types of energy for healing, including approaches as traditional as X-ray and radiation therapy for cancer, the use of electrical nerve stimulation for treating pain, and electromagnetic field stimulators for accelerating the healing of fractured bones. However, vibrational medicine also covers the more subtle forms of treatment such as acupuncture, homeopathy, flower essences, therapeutic touch, and that sort of genre. "

In his book Vibrational Medicine.

"We are not simply the sophisticated biological mainframe biocomputer of the brain and nervous system. Consciousness is not limited to the brain and central nervous system but is also seen as an integral aspect of the human heart. The old adage of acting from the heart as well as from the brain actually has a basis in science. One might say there exists a form of "heart-based" consciousness that acts from a center of love, compassion, and empathy toward others. In the vibrational-medicine view of human functioning, our emotions are not just the result of neurochemical reactions in the limbic system or the emotional centers of our brain. Our emotions are also influenced by a greater, spiritual energy field that encompasses and influences the entire physical body and nervous system. Our reactions to life are recorded not only in the biochemical patterns of memory storage in the brain but also in the seven major life-energy centers of the body that help to nourish our cells and organs. In the energetic view of the human health, we are more than mere biological engines. We possess bodies that are energized and motivated by the forces of our spirit and soul. We are energetic beings whose ills may be healed not only by surgical procedures and drugs but also by different forms and frequencies of energy. It is this energetic viewpoint of human beings, as more than just flesh-and-blood mechanisms, that is embraced and described by the vibrational medicine model of human functioning."

Acupuncture:

"Acupuncture is the art of needling the body to produce healing. Medical historians have found records documenting the existence of traditional acupuncture treatments in China dating back five thousand years.
....Ancient Chinese acupuncture maps reveal a unique system of specialized points running along channels that feed energy to the organs of the body. Acupuncturists refer to these channels or lines as meridians. Traditional Chinese medicine teaches that the placement of acupuncture needles into specific acupoints affects the movement of ch'i, a unique form of life energy, which flows through the meridian channels to nourish and support the various organs of the body."

Chakras:

"There is another form of energy that is also important to human health. This type of energy might be referred to as "spiritual energy." Through a variety of different forms and pathways, spiritual energy flows into the cells and organs of the physical body. One pathway of spiritual energy flow is critical significance to human health is a unique system of seven major energy centers known as the body's chakras."

Traditional Chinese Medicine (TCM) is an extremely fascinating form of healing. I don't think it should be taken lightly or thought of as nonesense. There is so much to the human body that Western medicine has yet to discover. Its funny how scientists won't hesitate to use an EKG and other electrical energy equipment to treat illnesses....but will not give credit to the possibility of that same life energy (acupuncture, chakra) that could be found at the root of the problem.
Perhaps one day Western medicine will be more willing to work together with Eastern medicine. The possibilities of that!

Acupressure points: