For children with special needs, especially Mucopolysaccharidosis, oral and dental health can be one of the biggest challenges.
Using Hunter Syndrome as an example, children not only have innate deficiencies in enamel which can result in more cavities, but also cognitive and behavioral challenges can make brushing (much less flossing!) teeth on a regular basis incredibly difficult. As a result, it is not uncommon for Hunter Syndrome boys to have significant early tooth decay requiring fillings or extraction.
That brings us to a second challenge – for children who cannot receive sedation outside of a hospital setting, fillings or extraction then requires a full anesthesia team, operating or procedure room, a dentist with privileges, and hospital scheduling.
As such, I thought it worthwhile to discuss some of the oral and dental health strategies and resources available to children with special needs. There are four tips that I think are important:
LEARN: You can research about the potential impact of your or your child’s condition on dental and oral health:
UTILIZE: From everything you read, you need to identify and implement strategies that are appropriate to your child and his or her specific condition and challenges. Helping the Special Needs Patient Maintain Oral Health, although directed more for dentists, can give you some ideas of strategies as well as products that might be helpful for your child. There are obviously strategies that will be helpful for the every day tasks of maintaining dental health as well as strategies for making dental visits easier.
For dental visits, as I note below, we determined that Case would need as many of the tools that the dentist uses as possible – to play with, practice with, and become more comfortable with. We also visited the dentist’s office several times before his actual visit, discussed his needs and our ideas on a “pre-visit” with the dentist, and at some point, we had to “wing it” when we tried all the different strategies on the actual visit itself. For the answer as to how we finally were able to complete a dental visit, read to the end!
CONSIDER: As noted in the document above, there are a number of specialized products that can be helpful with both maintaining your child’s oral health as well as with preparing them behaviorally and emotionally for dental visits. We found the following sites extremely helpful:
Another product we used to get Case ready for the dentist was the Play Doh Dr. Drill and Fill. We actually never used the play doh, but the little tools and mouth were the closest thing we could find to a way to play dentist. We used them on the head that came with it and on each other!
An alternative we considered was the Alma Designs Dentist Kit. It is a soft pretend dentist kit. For us, it didn’t seem real enough and lacked the ability to actually stick the pretend tools in the mouth without them getting… yucky. But, it might work for you.
Another idea is to ask your child’s dentist at your pre-visit if they have any plastic or otherwise disposable or borrow-able tools for you to practice with your child.
FIND: Finally, be sure to find a dentist who is patient, listens to you, and (in most cases) used to dealing with children with special needs. You may also find that occasional dentist who, although they’ve not seen (many) kids with special needs, they are very open and patient and would also be a good choice for your child.
For us, we originally felt limited to choosing a dentist who had privileges at our children’s hospital because Case cannot get sedation outside of a hospital setting so even a filling would likely need to be in a hospital. However, once we found switched our typical children to a wonderful local dentist, we were able to discuss Case’s needs and felt comfortable with him for regular care, even knowing that we’d have to use someone else for any hospital-based fillings or other procedures.
Here is some additional information that might be helpful in choosing your special child’s dentist:
Here are some examples of dentists who specifically discuss their treatment of children with special needs (note: we do not use either of these dentists and know nothing of their actual practice, so this is not necessarily an endorsement):
So how did we finally convince Case to sit and let the hygienist clean his teeth and brush fluoride on, as well as let the dentist check out his teeth? After running through all our strategies at only minute 5 of the visit, I ended up just sticking my fingers in the side of his mouth between his teeth and said, “Case, PLEASE don’t bite Mommy’s fingers, please!” Saying that every 10 seconds or so kept his teeth perched just on my fingers without him taking a huge chunk out of my flesh.
Unsanitary? Um, yes.
Risky to my finger health? Seriously.
But effective? Absolutely, and that’s what I care about in the end.