DISCLOSURE: Noelle Copeland RDH is an Oral Care Specialist and Dental Consultant who provides content for Brilliant Oral Care and Baby Buddy.
Cerebral palsy is a title used to describe a collection of disorders that affect a person’s ability to move, maintain balance or posture, motor reflexes, and the cognition to communicate fully. Cerebral means to associate with the brain and palsy means paralysis of function or motion. In essence, cerebral palsy means the brain, in some way, is not functioning correctly with the rest of the body. The cause of cerebral palsy can be from abnormal brain development while in utero, before birth. It can also be the result of a brain injury after birth.
There are five types of Cerebral Palsy
Since the main characteristic of cerebral palsy is a decreased ability to move and maintain balance, oral care can be very challenging for these individuals. Therefore, more often than not, oral care and personal care are provided by a trusted parent, caregiver, or full-time nursing attendant.
I recently connected over the phone with a family from Tennessee and was introduced to Xander. Xander is a budding 9-year-old with cerebral palsy. His older sister Rylee was a joy to talk with, and she was kind enough to share Xander’s story with me. Rylee initially reached out to us because she had difficulty finding Xander’s favorite oral stimulator, which happens to be our Brilliant Teether-Brush. I was immediately intrigued not only because my heart and passion in clinical care are always with my special needs patients, especially the kiddos, but because I have personally used teether-brushes with my patients for the same reason Xander was using it; half soothing for oral stimulation and half preventatively for oral care.
Having my own special needs child, I radiate empathy for the challenges so many families triumph when caring for their loved ones. So, I wanted to know what Xander loved and what he struggled with, and how that affected his oral health. I know from my own experience that hearing the stories of others who have the same challenges as you can be life-changing. And often, it’s the little details of a small task or ritual that makes the most significant impact.
I think most people with cerebral palsy have some oral issues, if not many co-existing oral problems. Patients with mild to moderate forms of cerebral palsy can typically be treated successfully in a general dental office setting. At the same time, more severe cases probably need to see a dentist with advanced training in treating special needs. Cerebral palsy itself does not cause any specific oral condition or abnormality. However, it is more common that several adverse oral conditions are found more often in those with more severe cerebral dysfunction.
As I talked with Rylee about Xander, she shared with me that Xander is in a wheelchair most of the time but can move to the sofa or the floor, where he enjoys stretching out and getting some mobility on his own. I was excited to hear that Xander loves the Teether-Brush because I know how well it can clean the mouth and soothe the gums. It was interesting, though, to hear how Xander got the brush to begin with. First, they searched for a pacifier or teether to help him with his oral function and muscles, specifically suckling and motor skills. Since Xander has a G-Tube, he doesn’t use his mouth the same way we do. Doing motor exercises, say with a pacifier, helps him swallow his saliva and gain the ability to make sounds to communicate. Xander keeps his favorite teether-brush attached to him with a paci clip to control using it when he needs it.
Rylee shared with me that Xander likes having his teeth brushed, and they aim to do this for him at least once a day. He prefers being moved to the sofa to have his teeth cleaned, and I think this is a super-smart move on their part. I’ve always counseled my patients to “do the best with what they have to work with” when it comes to oral care, and sometimes that means breaking the “so-called” rules a bit. If this implies toothbrushing or a sponge bath happens outside the bathroom, then so be it! If you are struggling to provide oral care for your loved one, try some of the options below as you attempt to do oral care.
If there is anything that I have learned from Xander and his family, plus my own experience with my special needs family, on top of all the special needs patients I’ve treated in my clinical career…. It’s this...each individual is unique, and care needs to be made for them, “specifically,” and this is only achieved when you have a “TEAM” approach to your care practitioners. Yes… certain circumstances occur more frequently in those with special needs but when it comes down to it, considering the individual is the essential aspect of it all.
One of the last bits of wisdom 17-year-old Rylee shared with me was to “Celebrate the Small Everyday Things.” For her, it was Xander waving goodbye or hello to them. Such a simple gesture that we often take for granted every day, and here she is at the young age of 17, seeing the grace and mercy in a 9-year-olds precious wave.
Xander’s journey is just beginning, and although I won’t divulge all the details about him and his family in this blog, I highly suggest you take a quick minute to learn about them, watch them here https://www.wvlt.tv/2021/06/28/he-was-just-lifeless-east-tenn-teen-desperate-help-disabled-brother/
I started out wanting to supply Xander with some teether brushes, and I’m ending with asking you all to come alongside me in helping Xander get a handicap-accessible van. So please join me in loving on this family. If you would like to donate to Xander, please visit the GoFundMe link provided. https://www.gofundme.com/f/wheelchair-van-for-booder?utm_campaign=p_cp_display&utm_medium=copy_link&utm_source=customer
“Helping one person might not change the world, but it could change the world for one person.”
If you would like to reach out to me personally regarding this story, please email me at email@example.com. Remember to #BRUSHBRILLIANT.
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