Syngap1 patients often have a condition called Hypotonia. Hypotonia is the state of having low muscle tone in the body. Hypotonia affects the entire body, including the mouth. Many of our Syngap1 patients struggle in their ability to communicate verbally. Part of this could relate to reduced oral muscle tone and coordination. While Hypotonia cannot be reversed it can be compensated for by strengthening the muscles. Oral motor exercises help to strengthen the muscles in and around the mouth.
Try these fun exercises to help strengthen the mouth:
You can use a z-vibe or even an electric toothbrush to help regulate the sensitivity in the oral cavity. Patients with low oral muscle tone have little understanding of what is happening in their mouths and providing stimulation will help awaken their senses. Have them push the vibe or toothbrush with their tongue helping them to build strength and coordination.
Use a preferred tasting item such as a lollipop and encourage them to stick their tongue out to try and reach for the lollipop. Let them have a small taste before beginning the exercise so that they know what they are working for. Once you have them sticking their tongue out start moving the lollipop around the outside of the mouth trying to have them follow it with their tongue. Go around all areas of the mouth to ensure they are fully maximizing the movement potential of their tongue. Do this for about 5 or 10 minutes and give them short breaks – its hard work! Reward their efforts by giving them an occasional taste and reminder of what they are working for.
Bite down hard
Use a chewy tube and place it in between their teeth and encourage them to bite down and hold it. Have them hold it for as long as they can up to 10 seconds and then have them release the chewy tube. Try this exercise for three to five repetitions.
Using a mirror try and get the patient to copy faces that you are making or to stick their tongue out. Try to have them move their mouth in new or different ways. Trying things like smiling, or making an “oooo” face, or opening their mouth really wide will help bring awareness to their mouth and help get them used to maneuvering their mouth in various ways that could be beneficial as speech develops.
As with any exercise, start slow. Strength is built over time, not overnight. Have patience and most of all make if fun! If it is too much like work you might have trouble keeping a willing participant!
To learn more about how SYNGAP mutations affects our children, you are invited to our First International SYNGAP1 Conference. Registration is FREE
!! November 30 – December 1, 2016 at Texas Children’s Hospital - Women’s Pavilion 6621 Fannin Street; Houston, Texas 77030.
We will bring together stakeholders that include patient families, researchers, and clinicians. One of the primary goals is to maximize scientific resources by building collaborative approaches that are efficient and synergistic. The special opportunity of the scientific community to talk first hand with patient families can bring insights not normally available to guide research efforts. Leveraging access to all communities of SYNGAP1 patients, including the Autism and Epilepsy community can enable identification of other undiagnosed or misdiagnosed children.
The presentations will focus on topics related to SYNGAP1 biology and translation to clinical application. Experts will lead discussions on current and future avenues of research, exchanges ideas and available research tools to share. Topics will include natural history studies, clinical trial design and therapeutic targets for identification in model systems. Participants will gain valuable knowledge to find faster pathways to therapies from theory to practice in an environment that fosters and facilitates collaboration and open data sharing. We look forward to seeing you there!
What is SYNGAP1
SYNGAP1 is a non-syndromic neurological disorder that causes intellectual disabilities. In recent findings SYNGAP1 has been a gene linked to autism. Many of the children also suffer from some form of epilepsy.
Images courtesy SYNAP1 and wikimedia commons.