Monday, March 19, 2012

An alien is controlling my thumb

The thumb danced and jiggled back and forth. It was as if an alien was controlling it.

The alien’s name is Essential Tremor. It was a foreign experience to this five-year-old girl. She was trying to complete a connect-the-dots picture with great effort. Yet, this experience was unusual for her. Despite being diagnosed with ET for over a year, she has remained relatively tremor free or with a slight tremor that does not seem to bother her. Yet, after a week of late nights due to her participation in the school play, her shake emerged. She looked at her thumb in amazement. Like why is my thumb shaking so crazy like. She held the thumb up and simply watched it.

“My thumb is shaky,” she said.

“That’s because you’re tired,” I replied and then explained she had a shake (Essential Tremor) like Daddy and it got worse when she was tired.

There was little she could do without shaking. As she ate her bread, she shook. As she tried to complete a connect-the-dots game and a maze, she shook. “I explained that daddy had the same shake.”

I asked her what she thought of that and there was silence as she watched cartoons. The silence was broken by a burp. I said, “oh really! That’s amazing. That’s what you think.”

We both laughed. Nothing else needed to be said.

Tiredness can bring out tremors. This tremor, for the most part, is not a part of her daily life for now. It does however show itself some times and gives a glimpse into this little girl’s future.

The neurologist said we should be accepting and provide accommodations. So we try not to call attention to it and provide accommodations without her noticing. There will be a time in the future when we will need to discuss it and possibly treat it. For now, she is a beautiful little girl that is learning cartwheels and handstands. She is learning to read and write. Most importantly, despite her shake, she is learning to write and stay with in the lines when she draws. She takes such care and loves art. Her determination and spirit are truly quite amazing.

March is Essential Tremor month. Learn more about ET at IETF.

Thursday, February 16, 2012

Messy eaters and sloppy handwriting

Recently, in a meeting I sat next to a man in his 40s or 50s asking the moderator about what to do at a dinner meeting if you are a messy eater. As the moderator provided her response, I started watching the man. Since realizing that Essential Tremor is often undiagnosed, I wondered if this man had a tremor. As the meeting progressed, it became obvious.

He would hold his non-tremor hand with his tremor hand after he was done trying to execute an activity, even though his hand was not trembling. When he would write, he would pause sightly before beginning to write in an attempt to control the mild tremor. He wrote with concentrated effort.  While his tremor was mild, he seemed to be accommodating it unconsciously.

After the meeting, I asked if he had a tremor. He said, I am coming to believe that I do have a tremor. I explained that it may be essential tremor and that it appeared to be activated when he was executing an activity like writing, etc. I explained that my daughter had ET and so did my husband. I referred him to the International Essential Tremor Foundation website as a resource and explained that he may have options. He started to explain that many people in his family had a tremor; his handwriting was terrible, and he was a messy eater. I tried to reassure him that he was not a messy eater or a poor hand writer. He simply had a tremor that made those tasks more difficult.

At that moment, I was grateful my daughter had been diagnosed at an early age. This wonderful kind man had simply accepted that being a messy eater and having poor handwriting was a personality trait that he was either unwilling or unable to conquer. Essential Tremor is not a reflection of poor self care or carelessness. People with ET have an amazing inner strength and resilience that is executed everyday to overcome their tremor in completing the smallest of tasks.

This experience was important to me because ET should not be a reflection of the personality, simply a challenge that needs to be addressed. Our family does not talk about Essential Tremor and I am not sure that my daughter remembers that she has a tremor. She is becoming more proficient in her writing everyday and actually she is beginning to color inside the lines.

It is not all roses. Both my children's artwork seems less advanced compared to the other children. Cutting is extremely challenging for them. It is jagged and when they try to cut in a circle, it is worse. Yet, as long as the teacher understands their challenge and respects the effort they are exerting in attempting to complete their work, the sense of self-esteem is not damaged.

Someday accommodations and acceptance may not be enough but today it is enough.

Conferences -- No surprises this time but what does the future hold

Spring, 2011

Teacher Sarah hosted conferences this week with the usual overview of how the kids were doing. At four, they had progressed as expected. This time there was little discussion of Leah's tremor.

Both the teacher, Leah and I have all learned so much. Leah seems unphased by tremors now. The teacher tries to remember to not call attention to her tremor and allows Leah to decide when she needs the weighted pencil and gel paper holder or the weighted wrist weight for cutting with scissors.  Leah goes to get her box of tools when she needs it. Leah does not use these tools when she is drawing with a crayon. The drag of the crayon seems to reduce the shake, Teacher Sarah said. Most of her classmates do not pay attention and are more fascinated with the tools she uses than judgmental.

 I thanked her for noticing the shake and for not creating tension with Leah by placing unrealistic expectations on her like coloring inside the lines. Yet, Leah is learning to color inside the lines on good days. I told her stories that I had read where teachers were knocking off points for penmanship. Our doctor indicated a computer may be necessary in the future and to teach her keyboarding as soon as possible.

Amazingly, she can manage a touch screen on a phone and play memory with ease. While I can see a minor shake as she plays, she simply keeps trying and moves through the stages of the game.

I wonder if it will get worse and if it does will teachers in the future be as accommodating, encouraging and helpful as teacher Sarah.

*** Note: This post was written last spring but was not published. As it adds to the journey, it has been belatedly posted.

Wednesday, February 1, 2012

Resilience comes naturally.

Resilience seems to come naturally for children. They think nothing of falling down a million times to learn how to crawl, walk or any number of activities.

Since the Essential Tremor diagnosis a year ago, my five-year old Leah has continued to learn to write letters and numbers. Her shake is less noticeable as she becomes more proficient at writing. Our neighbor is a neurologist and at a dinner party, she explained that initially, her shake was more pronounced because she was concentrating so diligently.

We hardly notice her shake in everyday life. Yet, there are days when she is a messier eater than most five-year-old children or her exhaustion from the day makes her writing a bit shakier. Also, she shakes when she tries to cut paper. Consequently, her artwork is a bit more jagged than the other children. 

Recently, the Kindergarten teacher had an interesting observation. Leah's twin brother is in the same class. Their teacher mentioned that Leah's brother also seems to shake when holding a scissors. He has not been diagnosed as it seems unimportant at this point.

When the shake is present, she works through the shake without mentioning it or even noticing it. Sometimes, she simply needs to take a short break before completing her task or homework. Her teacher understands this and simply allows her to complete it another day. The shake is most noticeable when she is trying to make beaded bracelets, which is a common activity for girls this age.  I watch her try and try again. Her resilience is only exceeded by her concentration. After some time, she often enlists her friends to help her. It never discourages her spirit. 

Despite these challenges Essential Tremor has been a minor annoyance for us. Thankfully, we have had wonderful teachers who have been helpful and understanding. They do not draw attention to her shake and she has thrived. 

Hopefully, the shake does not progress, or if it does progress, may it progress slowly into old age.

Tuesday, February 22, 2011

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.

Friday, February 18, 2011

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.

Thursday, January 20, 2011

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.