Essential Tremor-An Often Overlooked Condition that Affects Approximately 3.5 Million Children in the U.S. Alone

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What progressive neurological condition causes a rhythmic trembling of the head, voice, legs or trunk; can be treated with medication or deep brain stimulation; has no definitive cure; and is eight times more common than Parkinson’s disease?

If you’re stumped, you’re not alone. The condition just described is Essential Tremor. Essential tremor, which is also known as Familial Tremor, Benign Essential Tremor or Hereditary Tremor, affects approximately 10 million Americans. It is a movement disorder that affects not just adults, but is also found in children of all ages.

I, Danea Key, and my daughter, Gracie, now 11 years old, suffer and have suffered from Essential Tremor for many years. We are here to share our stories in honor of Essential Tremor Awareness so that we can all become more knowledgeable about this common and disruptive disease that is missed by so many parents in themselves and their children.

Perhaps nowhere is the condition more frustrating than at mealtime, a happy occasion most of us enjoy with family and friends. Gracie says, “My hands shake when I’m eating, when I’m balancing something on a spoon or fork and I’m not able to stab it sufficiently hard to get it to my mouth,”  “Holding a sandwich can be difficult. Drinking is difficult unless I use a straw.”

I used to joke that essential tremor is not going to kill you unless you starve to death from not being able to keep the food on a fork or spoon. I use a fork now – but I didn’t use a fork for a long time.

Gracie, who describes her tremor as “a major annoyance that can be dealt with and lived with,” first developed symptoms while in her early months of life. It was a familial condition experienced by me as her mother. Her younger siblings have it as well. Yet no one before me, had ever known of anyone else in the family history that had suffered from Essential Tremor.

For Gracie and me, the road to achieving peace with our tremor has been more fraught. The relentless tremors shake our hands and neck, causing us to sleep fitfully; in other words, fighting to have a well-rested night is merely impossible, lots of tossing and turning due to uncontrolled movement during sleep.

Although I am now a stay at home mom and work from home, my daughter, Gracie has suffered a great deal in school. Even with accommodations, there are so many “legs” as the neurologists call it, that she suffers a great deal in almost anything she does.

After being prescribed so many medications and doctor visits after doctor visits, Gracie is still not where we would like to see her be, simply HAPPY! My tremor is problematic but not debilitating, while my daughter, Gracie’s tremor is so severe at times that it has become a nightmare for her just in daily routine, as well in school with her academics.

After becoming a mom, I went through a period of being really depressed, and I didn’t want to go out because of the tremor. I would have to take medication for the anxiety/panic attacks that I would have just at the thought of leaving home.

My Essential Tremor was never treated with medication, nor was I at a young age (when I myself knew there was something wrong) ever taken to the doctor to have the problem addressed. When Gracie was a baby (around three months), I as a new mom thought it was cute that when I would lay her on my bed, she would “air plane” her arms and legs, until I started working in a daycare, that Gracie attended, where there were therapists working with other children.

I was approached one day by a therapist there that had observed Gracie while working with another young child in the same room as my daughter. At this time Gracie was about 5 months old. The therapist brought to my attention that she had noticed when Gracie was laid on her stomach that she would spread eagle with her arms and legs as if she were about to take flight, and that while she was feeding from her bottle her tongue was not latching to the nipple as it should to be able to suck properly to feed. This was only the beginning of our journey.

I did take into consideration what she was telling me, although as a new mother, I never thought anything to be wrong with my child and that this was just something of the norm and that it was “cute”. Man was I wrong!

My beautiful daughter is now 11 years old and has just like me learned to cope with her tremor, knowing that even with medication to help, it will never just go away. That it will always be a part of her life, yet at the same time makes her a very unique and special gal.

WHAT CAUSES ESSENTIAL TREMOR AND HOW IS THE BODY AFFECTED?

Essential tremor is caused by a neurological nerve disorder; a brain disorder, that causes a part of your body to shake uncontrollably. The unintentional shaking motion is called a tremor. The hands and forearms are the most commonly affected areas. However, the following can also be affected:

• head
• face
• tongue
• neck
• torso
• In rare cases, tremors can occur in the legs and feet.

For more information regarding the causes of essential tremors visit http://www.webmd.com/brain/essential-tremor-basics

With Gracie, her tremors are worse than mine. She suffers the tremor in her neck, head, tongue, torso, forearms as well in her legs. I have the tremor in my forearms, legs, and hands. What a lot of people do not understand about the tremor itself, is that it is not always visible to an observer’s eye.  If you can only imagine that that jittery feeling inside your body when you get frightened or shocked by electricity, that is what the tremors feel; constant, uncontrollable shaking that won’t go away no matter what you do.

Exercising, to exhilarate your-self, playing physical activities, or simply using fine-motor skills (e.g., using your hands to write, eat, or put something together) literally drains the energy that you have. It exhausts you to the point where there is nothing left to do but rest and then restart. There are days that Gracie and I both will just get out of bed after a night’s sleep, and the tremor is so severe in the arms and hands, we cannot hold on to anything. Same as walking, if the legs don’t want to work, due to shaking so bad, well you simply wait on them.

HOW TO COPE WITH ESSENTIAL TREMOR?

There are many ways to minimize the degree to which Essential Tremor interferes with your life and work. Here are some practical suggestions:

• Learn all you can about Essential Tremor.
• Talk about your tremor with friends, relatives, and colleagues.
• Reduce stress by learning relaxation techniques such as meditation, bio-feedback, etc.
• Avoid things that worsen your tremor like caffeine and certain prescription medications.
• Join an ET support group. Find one in your community by calling the IETF toll free at 888-387-3667 or visit essentialtremor.org.
• Stay connected with the latest information about ET by becoming a member of the IETF.

COMMON SYMPTOMS OF ESSENTIAL TREMORS:

• Uncontrollable shaking that occurs for brief periods of time
• Shaking voice
• Nodding head
• Tremors that worsen during periods of emotional stress
• Tremors that get worse with purposeful movement
• Tremors that lessen with rest
• Balance problems (in rare cases)
• Slower Development as a baby (Meeting Milestones in a timely manner)

COMMON “LEGS” FROM ESSENTIAL TREMORS:

• Migraines
• Depression that can lead to PTSD (Post Traumatic Stress Disorder)
• Anxiety
• Restless Leg Syndrome
• Sensory
• Bigger bubble than others
• AND SO MANY MORE

HOW IS ESSENTIAL TREMOR TREATED?

Mild essential tremor may not require treatment. However, if Essential Tremor interferes with your ability to function or if you find it socially unacceptable, there are treatments that may improve symptoms. Treatments may include medications or surgery.

• Medications: Oral drugs can significantly reduce the severity of essential tremor. Medications include Inderal, Mysoline, Topamax, and Neurontin. Other drug options include the tranquilizersKlonopin, Valium, Xanax, and Ativan. Botox injections may also be a treatment option. This treatment has been effective for vocal and head tremors.

Surgery: Deep brain stimulation (DBS) is a surgical treatment option for people with severe tremor despite medical therapy. DBS involves surgical implantation of electrical leads into the thalamus. This is an area deep within the brain that coordinates muscle control that is thought to be affected in Essential Tremor. Most of my information is based from personal experience of my own as well as my daughter. As well, facts stated here are based from research obtained and used from Webmd.com. For more information on essential tremors and facts presented here please visit http://www.webmd.com/brain/essential-tremor-basics.

HOW CAN SCHOOL’S SUPPORT STUDENTS WITH ESSENTIAL TREMOR?

If Essential Tremor is affecting student’s in school, they would benefit from accommodations through an Individualized Education Plan (IEP) or 504 Plan. Gracie currently has an IEP to support her. Find out more about these legal documents, that protect students with disabilities or medical conditions, by talking to your school or reading Education Lingo Every Parent Should Know.

Suggestions for accommodations include:

• breaks/rest as needed
• sit out from physical activity as needed
• writing scribe as needed (someone to assist with written tasks or computer-based tasks)
• assistance to eat if needed
• extended time to complete school assignments and tests
• grades not penalized due to absence.

You may be able to think of some other accommodations that can support students with Essential Tremor. Comment your suggestions below!

I appreciate you taking the time to read my article and hope that it has opened the eyes to some, that like many other diseases or diagnoses, Essential Tremor is often overlooked or misdiagnosed. Please take the time with your doctor’s to fully understand a diagnosis.

Want to know more about this condition that affects so many children and adults? Check out Essential Tremor: The Hand I Was Dealt

Please share this information to spread awareness!