Diann Shaddox Foundation for Essential Tremor
Where to start if you have a child with tremors
First things first, be sure that your child has been diagnosed by a movement disorder neurologist. Many pediatricians and some general neurologists may not be familiar with the diagnosis of movement disorders in children. They may not know the other testing that needs to be done to be sure it is ET and not something else or that it is ET alone, as many children with ET have more than one disorder. If you need help finding a movement disorder neurologist, the best approach is to contact your local teaching hospital in your area and ask for an appointment with a pediatric movement disorder neurologist.
What should you expect from your child’s doctor visit? First, the doctor will want to gather as much information about your child’s tremor as possible. They will ask when you first noticed the tremor, and when it happens most now. Is it when your child is eating or coloring or writing? Is it there all the time? What exactly is shaking? Fingers, arms, legs, head? What makes the tremor better or worse? What other problems (if any) have you noticed? Arm or leg stiffness, jerky movements of the head, arms, or legs, and swelling of the legs can all indicate that there may be a condition other than ET, or in addition to ET, that is affecting your child.
Next, the doctor will do a physical exam. Most of the time the doctor will do a full exam, listening to your child’s heart and lungs, and checking the child’s belly. They will look at your child’s eyes, their smile, look at how they walk or crawl, and check to see how “strong” their muscles are. The type of exam to evaluate tremor will depend on the age of your child. For babies, most of the exam involves checking for normal infant reflexes, then presenting an object to the baby just out of reach to check for postural tremor, and then giving the baby something to play with to see they if shake when they try to bring it to their mouth (action tremor). Young children will be given crayons to draw with or blocks to build with and observed for different types of tremor during this “playtime”. Children over five will have an exam very similar to an adult evaluation for tremor, including being asked to draw a spiral, write their name, pour water from one cup to another, and drink from a cup.
After this exam, the doctor will likely schedule some tests, including blood tests to check your child’s blood sugar, thyroid levels, liver function, and other tests. They may order an X-ray called an MRI of the brain. MRIs are safe in children. Some children may need to be sedated to lay still for the test or may need a type of scan that requires “contrast” dye to be injected before the scan. There are some small risks with sedation and contrast that your child’s doctor will talk with you about before scheduling the test. Most doctors will not recommend a CT scan in children under 15 years old as there is a small (less than 1 in 1000) chance that a child can get cancer from high radiation exposure in some CT scans. If your doctor is recommending a CT, be sure to ask about the risk and other ways they could get the information they are seeking.
When all these tests are complete, you will have another visit with your child’s doctor to discuss the results. ET is considered a diagnosis of “exclusion” which means there is no test that will tell you that your child definitely has ET. The purpose of these tests is to make sure there is nothing else causing the tremors that needs a different treatment.
There are some ways you can help your child during the doctor visit and during the testing. First, tell them what to expect. Talk to them about what is in this post so they know what will happen during the visit. Next, if your child is old enough to talk to the doctor themselves, give them a chance to do so before you answer the questions for them. They may be experiencing symptoms that you haven’t seen and that they haven’t told you about. When you answer for them before giving them a chance to answer, the doctor may not get all the information they need. Lastly, when possible, take your child to the place they will get their blood drawn or have their MRI scan before the day of the appointment. This will help them be more at ease. You can also “practice” at home what will happen during these tests to help them be less anxious.
Once you and your child’s doctor are comfortable with the diagnosis, then they can begin to discuss treatment options with you. There are a number of natural treatment options for children with ET as well as medical treatments available.
Darlene A. Mayo MD FAANS
My name is Darlene Mayo.
I am a physician who specializes in the treatment of essential tremor. I created this group to provide a forum for parents to have a community to discuss concerns and challenges with having a child with ET. This group is also linked to our FB page by the same name that provides resources to help you and your child.
I am working with a non-profit agency, the Diann Shaddox Foundation, to raise awareness about ET in the school systems. We are creating content to provide to school principals, teachers, nurses, and other employees to educate them regarding recognizing ET and ways they can help children with ET at their school be set up for success:
One of our missions is to reduce bullying by other children and other adults. Even today this is a pervasive problem in the schools. By raising awareness and educating about ET, we strive to help every child with ET to feel valued and supported in their school and in social settings.
We welcome your active participation in this group. Please share resources and content that you have found helpful. And use this as a forum to discuss issues you have faced.
Together we can provide a better world for our children.
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