Why Endless Research Won't Help Treat Your Child's Tics, PANS/PANDAS

Uncategorized Jan 28, 2022

My Dear Friend, “Dr. Google”

I have been in your shoes. I know exactly how it feels to watch my child suffer from debilitating tics and question everything in my life. I obsessively combed through articles, clinical trials, research studies, lifestyle recommendations, therapy possibilities, off-label pharmaceutical options, and even researched invasive surgical procedures just to make sure I wasn’t missing anything that could help my son. I tried so many of the suggestions that I found on the web, out of sheer desperation and hope for success. “Dr. Google” was my best friend until I realized that it was becoming my worst enemy. I was driving myself crazy trying to piece together a science-based plan for my son using general and disjointed information from the web. It was time to break up with my dear friend. 

Fast forward to now: I know exactly how to help your child. In this article, I summarize 3 incomplete approaches to solving tic disorders and PANS/PANDAS. This will save you the search bar field trip! 

Self Help Themed Advice

You play an integral role in helping your child stick to routines such as getting enough sleep, drinking enough water, and eating healthy foods. Adequate sleep and hydration, eating a healthy whole foods diet, and avoiding stress are excellent strategies for people suffering from tic disorders and/or PANS/PANDAS. 

You may choose to ignore your child’s tics when they happen or you may have a heart-to-heart with your child about all of the ins and outs of his/her tics (think: when, why, how, what helps, what doesn’t). These are personal decisions for you to make with your child. Most importantly, you should explain to your child that they have nothing to be embarrassed about. 

Do not scold your child for ticking. If you feel overwhelmed or overstimulated, do not be ashamed. It is completely normal for parents and caregivers of children with tic disorders and PANS/PANDAS to sometimes feel this way. Take a time-out for yourself. Step outside for a few breaths of fresh air, count to ten, or invest in a pair of good old-fashioned earplugs to help reduce the noise. 

Inform your child’s teachers and caregivers of his/her tics. Giving specific details to these individuals can help them understand what your child is experiencing and prevent them from making the mistake of disciplining your child for sounds or movements that he/she can not control. Here is a link for tips on talking to your child's teacher about tics. 

I fully support these suggestions that I have summarized. These ideas are not cures or end solutions, but may help alleviate symptoms your child experiences and help support him/her as a whole person during this journey. 

Therapy Options

Comprehensive Behavioral Intervention for Tics (CBIT) focuses on learning specific behaviors in order to reduce tics. This therapy approach is very intensive, requires many appointments and a lot of concentration from your child. If your child does not buy into the treatment plan or deems it to be too difficult, results are compromised. Exposure Response Therapy (ERP) focuses on teaching your child to ignore the tic until the urge to do so subsides. My clients have heard their children describe this technique as similar to “trying not to blink their eyes” or “trying not to itch” all day long. Once the child becomes distracted from actively employing these techniques (tv, video games, etc.), the tics usually return.

Your child’s ability to ignore what his/her body is saying does not solve the underlying problem. Even if he/she follows every instruction and learns to implement these strategies, the root cause remains unidentified. The outward appearance of normalcy may be achieved to a degree, but under the surface, a storm still rages. The true issue has not been addressed and the results are temporary. Tics are a symptom that needs to be paid attention to. 

Medications

According to the Mayo Clinic, “There's no cure for Tourette syndrome. Treatment is aimed at controlling tics that interfere with everyday activities and functioning.” Directly below this quote on their website they list a variety of medications that are prescribed off-label in an attempt to help lessen the severity of tics. According to FDA.Gov, “unapproved use of an approved drug is often called “off-label” use. This term can mean that the drug is: Used for a disease or medical condition that it is not approved to treat.” Sometimes antibiotics and steroids are prescribed for longer time frames than recommended. 

As an expert in the field of tic disorders and PANS/PANDAS (and as a mom), I strongly encourage you to have a detailed conversation with any MD prescribing off-label or extended use medications to your child for his/her tics, PANS/PANDAS, or any other issue. Do not be afraid to ask questions during your appointment or get a second opinion. (At the end of this article I provide a link to a free printable question guide!)

Ready for the Whole Truth?

Self-help, therapy, and medications may help your child’s tics, but it is unlikely that any of these things in isolation is going to eliminate them. Google can give you generic information but it is not individualized for your child’s unique body systems. I promise you will drive yourself crazy trying to make a comprehensive and data-driven plan for your child based on results from your internet browser search bar. I do not believe in playing a guessing game when it comes to your child’s health and future. When we work together we can create an individualized plan for your child. It's time to “test, don’t guess” in order to uncover exactly what the root cause is. 

The internet can truly be a wonderful tool, but it can also be a torture tumbler of “maybes” and “what ifs” for parents like us. Stop searching. Trust the testing I do in the Foundations to Flourish program. My approach is well established and it works. With love, my advice is: break up with our dear friend, “Dr. Google.” 

To find out more about how I listen to your child’s body to make tics disappear, sign up for a discovery call with me HERE

Resources:

HERE is a general list of questions that you can use in any appointment where medications are being prescribed.

Additional information about off label drug use for anyone wishing to learn more: FDA.org, WebMd Info, NCBI Info 

Sources:

https://www.webmd.com/children/what-is-pandas-syndrome#091e9c5e81b4d15d-2-5

https://www.fda.gov/patients/learn-about-expanded-access-and-other-treatment-options/understanding-unapproved-use-approved-drugs-label

https://www.webmd.com/a-to-z-guides/features/off-label-drug-use-what-you-need-to-know

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3538391/

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