Operation - Where your the doctor

As a kid, I enjoyed playing the game Operation where you were the doctor. When Leah's teacher brought up her concerns with her minor shake, my husband said that he had a little shake and it really never bothered him, except when it came to playing the game Operation. He never did well when he played the game. Then, he mentioned that his grandfather had a shake and I asked is that why he became a mortician instead of a doctor or a surgeon?

What ever his grandfather's reasons for his career profession, our ET journey began the night of the parent-teacher conference. Although, we may not have realized it. The teacher's mention of our daughter's shake and the discovery of my husband's shake (that I really had never noticed before) gave us some pause. Then, the busy holidays began. My husband's lack of concern and his experience with this unexplained shake made me overlook my initial concerns.

A few weeks later, Leah's teacher asked me if I ever had Leah's shake checked out. With a bit of surprise, I said no. Since her father had it, I thought it was an inherited trait. This would later prove somewhat true as ET is inherited (Autosomal Dominant inheritance) but is categorized as a disorder. Mrs. Sarah's concern and her description of recent challenges Leah had faced that week with her writing made me make an appointment with the doctor. A bout of croup made the appointment occur later that day.

After a discussion about croup, I explained to the pediatrician Mrs. Sarah's concerns with her shake. After asking about Leah's family history, her father's shake and whether he had Parkinson's disease in the family, he began testing her. She was not the most cooperative. Actually, it was quite chaotic with Leah playing with her twin brother while we tried to discuss a diagnosis.  "Could it simply be an inherited family trait?" I asked. His response was less than reassuring as he explained she likely had Intention Tremor and handed me a referral to a pediatric neurologist. We had an appointment a week later.

A quick internet search of Intention Tremor provided plenty of concerns including M.S., brain lesions and brain cancer. At an appointment with the pediatric neurologist, she provided us with ET as the diagnosis, which was chronicled in the first Color Outside the Lines post. Yet, the neurologist explained that due to her age and the shake's presence at such an early age, Leah's case may progress at a faster pace or become more severe with age. Yet, essential tremor is not uncommon among children: 5% of new ET cases arise during childhood (Louis et al., 2005). With children, especially young children, it is easy to overlook, dismiss or simply rationalize the shaky writing as immature or undeveloped writing skills.

Simple activities can be challenging for my daughter. After a long day this weekend, playing with friends, eating too many treats and being exhausted from a long day, Leah tried to put the toothpaste on the toothbrush by herself. Her little hand shook from side to side (more vigorously than usual) as she attempted to aim, stop the shake and push the button to release the toothpaste. The combination of being tired, eating sweets, and attempting a new activity that required concentration was too much for her to control her tremor but she did not give up. I simply offered to do it for her. As she gets older, she may not be as receptive to help from her mother. Two days later, she would put the toothpaste on herself. Nothing will stop this little girl's determination.

Diet and tremor are not necessarily linked to tremor triggers, and yet, our neurologist stated that being tired and/or being sick would make her tremor worse. Also, the neurologist stated that the more a person tries to concentrate, the worse the tremor can be. We have noticed this to be true. When Leah writes new letters and numbers, the tremor is triggered. For the letters she has practiced, the tremor is less pronounced.

Interesting research lends hope for children like Leah. For now, Leah's tremor is manageable and her teacher is amazing, understanding and proactive. At times, you cannot even tell that she has any disorder at all. Katherine Hepburn never let her tremor bother her and in fact, it became a legendary aspect of her persona.

Little box of tools

Last week, I visited my daughter's school and her teacher was quite excited to show me the progress they made with my little sweetie.

The box was a magnetic school pencil box. On the outside of the box, the OT had drawn a picture on the box with a scissors, a bracelet, a gel-type mat and a weighted pencil that she made especially for her. The pictures indicated when she was supposed to use each tool. The hand weight is for cutting with scissors or when she writes over her head, which is a common trigger for ET tremors. The mat and weighted pencil are for when she writes her letters and words. Despite being four, she is learning how to write words phonetically.

The  weighted bracelet looked like a small, light hand weight that you would use to exercise. It was nothing fancy. In fact, I wanted to bedazzle it so that my daughter liked it better. I am not a bedazzler  but my girl likes things that glitter, shimmer and shine.

Leah uses the weighted bracelet to cut a circle with a scissors and when she is writing on the blackboard, and yes, they still have one of those in the classroom that each student uses to sign their name when they arrive each day. She uses the hand weight to reduce the shake when she cuts paper. Teacher Sara was so impressed with the results. My little girl cut like there was no wiggle, jiggle or shake.

The Velcro weight is on her pencil and it is used for when she writes. The last piece in her little box is a gel mat that allows the paper to stay in place. Teacher Sara was amazed at the difference in her writing and the progress she was making. It was rather cute that one of the other pre-kindergartners picked up the bracelet and gave it a try. The little girl's mom put it back in the magic toy box. We also have a weighted pencil at home now too.

Our doctor sent over a diagnosis to allow the OT person to help her now and over time as she needs it. We are coming to accept it and Leah is aware of it but does not let it rule her life. She calls it her shake. When we ask her who she is like, she says her daddy.

Thanks to Teacher Sara, my little girl was diagnosed earlier than most people. My husband was not diagnosed until he was in the office with my daughter's doctor. One of the goals of this blog is to connect with people and parents who are dealing with this or have dealt with this. There is so little information on ET in children that it can be challenging to parent a child with ET to help them flourish as they learn and grow. I encourage you to tell your story in this blog and join the conversation.

OT for ET

Today, when I dropped my daughter off at school, her teacher explained her plan to help my little Leah. The goal is to help her without drawing attention to her Essential Tremor shake. Essential Tremor is inherited and causes people to shake. It is not something that they can control and when they concentrate on stopping the shake, it can actually get worse. So, for my four-year-old, learn to write letters is a challenge. When she learns new letters, her shake is worse. She has a happy attitude and doesn't talk about it much. The doctor said she seemed to be unaware of the shake that is in both hands but I know she knows. Her Dad has a milder case and we told her she is just like her Daddy.

While painting her nails this weekend, I accidentally said, you may not be able to do this when you are older. She replied "because of my shake." I backpedaled but maybe not so well. Strengthening my filter will be necessary to not draw attention to her disorder.

At school, the Occupational Therapist will observe her without drawing attention to her condition. Then, they plan to slip in the tools to help her with her shake -- weighted pencils, etc. I will be buying some of the tools for home.
Here is to an interesting journey.

Finding your happy place

 Leah's picture of winter with icicles on the house, snow clouds, snowflakes and snowballs. She wrote "Winter" across the top. Her shake is evident but her letters are legible.

While talking with my mom on the phone, I was discussing the struggle and the challenge my daughter had before her. I was coming around to acceptance after a short bout with grief and shock at the fact that I could not fix this for her no matter how hard I might try. We were discussing the drawing she made in pre-Kindergarten that is posted above. With slight sadness, I said something like she will never be able to make her circles perfect without her shake. Just then she peaked around the corner from another room and I realized how wrong I was in making that statement and in failing to frame her ET with a positive attitude for the rest of her life. She believes in magic, Santa Clause and that everything is still possible and it is.

I will never forget those sweet eyes peeking around the corner looking at me as if to say, "Are you talking about me?" I decided I could not take the chance of talking about it around her and especially in those terms.  It weighed heavy on me as I pondered what it is that I could do? How could I foster a positive attitude, especially, when you are working with a condition that gets worse the more you try?  I remember the doctor saying the harder you try to stop the shake, the worse it gets. As the doctor is speaking to us, I noticed her own hand shook from an ET tremor.  I said I guess she will not be a surgeon and the doctor said that is why I am not a surgeon.

The next morning I woke up to my little girl wanting to have her snow globe story read to her. With the pillows up against the wall and the two of us on her bed reading, we talked about school. I simply told her that I had a secret to how to do well in school -- take deep breaths and have a good attitude. Also, when she got frustrated she should go to her happy place, which she decided was her bed. Later that morning when she was leaving for school I asked, "What are you going to do to day?" She said "Take deep breaths when I get frustrated and go to my happy place." She left with her bright happy attitude beaming as she left for school with her dad and twin brother.

A couple days later while I was making dinner, she said to me, "Today, I went to my happy place. When I got frustrated with my brother, I went to my happy place."

"Did that make it better," I replied.

And she said, "Yes, it made her happy."

I am glad that it worked for other situations besides for ET.  Now, I will be researching which weighted pens and grips that work for children. Children who write in big bold colors with crayons and markers.  Any suggestions? Please post a reply or send an email to essentialtremor@hotmail.com

Coloring Outside the lines ~ the journey with ET begins.

Coloring Outside the Lines is one parent's journey raising a child with an Essential Tremor or ET. I used to think that ET was a cute little alien from the movies until last week. My husband and I sat in a pediatric neurologist's office hoping our daughter did not have brain cancer. Our pediatrician had told us she had an Intention Tremor. A quick internet search later and brain cancer or a brain lesion were the best we could hope for.

After the neurologist tested her by having her stack small cones, line the cones up, and write her name, she asked my daughter to draw a stick person. Leah replied in the cutest little girl voice, "that's hard." She tried to draw it with a distorted circle and mangled legs an arms. She finished it with a smiley face. She is a bright and happy child who loves to make other people happy.

After testing my husband, who had a slight tremor as he raised his hands above his head, the neurologist diagnose my daughter with Benign Familial Essential Tremor. Naturally, we asked what we could do only to find out that there was not much that we could do for her. Acceptance and accommodations was all she said. I asked, how do you do that? By providing weighted pencils and supporting her. Also, exposing her to keyboarding early to accommodate her tremor.

Most of the information on the web is for older people not four-year-old little girls. The little information that is available is either informative in nature or not very positive.

My hope is that there are more parents of young children out there with ET. Parents who have helped their children overcome ET. Maybe you had ET as a child and overcame the tremors you experienced.