Teething for any child is a phase that can be challenging to manage. Add on all the complexities that a special kiddo brings to the table and you could be in for a wild ride. Consider not being allowed to have food or objects in the mouth for heightened safety reasons. Everything from being non-verbal and dealing with malformations, to aspiration risks and dietary restrictions can make this time a real booger. There's just more to overcome when dealing with teething for a special kid.
So what is a family to do to help their special children get through this without bloodying up every finger or getting sick?
Let's start with the big picture. Then we'll zoom in to the testing lab that our home became. You will take away tools, toys, and tips that make this phase as manageable as possible.
If your special special is anything like mine, it will not be straightforward and you may uncover a surprise or two along the way. However, being able to offer comfort and help your baby who depends on your diligent sleuthing skills is always worth the trial and research.
Doctors and Dentists
Clear the whiteboard and let's start at the top.
- Docs & Dents: Tell your child's primary care provider (PCP) and dentist that you suspect your kiddo is teething. Commonly perceived symptoms include extra drooling, irritability, gum swelling, tendency and increased desire to chew. Yep, this might include another appointment. Maybe two. Ugh! Do it anyway. Mouth pain is no joke, even if your special special can't tell you. At these appointments, talk about an action plan and pain management.
- Therapies: Many Speech Therapists have education on feeding, teething, all the anatomy, and applying helpful therapies to unusual scenarios. Ours has been so helpful! If your kiddo does not already have a speech/feeding therapist through ECI or from previous interventions, get referrals from your PCP (and the social worker associated with your PCP), and dentist. If they don’t know who services your area, ask nurses or hop on Facebook and ask the moms.
- Pain management: It's likely that some regimen of alternating acetaminophen (Tylenol) and ibuprofen (Advil) is where most providers want to start. Be sure to flex your expertise about your special special and remind everyone of their particular allergies and sensitivities. Ask what alternatives there might be for your kiddo. Ask how long they are comfortable with you administering pain meds around the clock before you need to loop them in again or adjust the plan.
- DME (Durable Medical Equipment): Do you have or need to establish a relationship with a DME company? Your doctor and dentist can send orders to the DME to get items that are especially useful during this time. Insurance will also get involved. With all those ducks neatly in a row (yep, that might take a hot sec for you, too), we were able to get tools like toothettes, oral care kits, and a prescription mouthwash. Another step that's worth the trouble for the long haul.
Story time:
My special special has an annual sedated dental procedure just to get the basics done like good X-rays and a deep cleaning. She simply cannot be asked or distracted enough for this to be safely done at a regular dental appointment.
We had been dealing with her heightened and constant discomfort for a while before this appointment was set. It became really challenging to comfort her or know what the true source of her agitation might be. We even suspected seizure activity to be the culprit. Other times it looked like the pain would cause seizure activity. Such a hard thing to watch your baby endure!
She went in for this dental procedure and the dentist came to chat with me after she had sent little miss to recovery. The dentist had in hand, two giant molars, a crazy X-ray, and a wild story.
This poor baby! Her "big girl" molars were coming in sideways above the gumline and hammering into her present two-year-old molars so badly that they were resorbing them. This intrusion was playing out on top of a major nerve running through, and we couldn't see or suspect any of this as the source of her unmanageable pain. No wonder she was so uncomfortable! The dentist removed the baby teeth to give room for the bully molars to drop down. We would not have figured this out until way later and only after additional problems. I was so grateful that we did the extra inconvenient appointments and got her annual procedure scheduled as early as possible!
Daily Comforts
Even with major problems uncovered and addressed, we still had a teething child with her special special situation to deal with on a daily basis. Seemingly simple tasks like waiting and making it to an appointment can seem like a mountain to climb when you need to deal with discomforts NOW. Here are the tools we use currently, how they helped us, and how they may help you.
Toothettes
The sponge on a stick. We use this to brush teeth and gums between the regular morning and night time brushings. These little treasures! For us, they are most frequently used after albuterol nebulizer treatments to prevent yeast buildup (thrush) in the mouth. If you do have a DME relationship established, ask your doctor or dentist if you can get an order for these with your regular supplies.
During hard times with teething, we also found them useful to
- chew on for comfort
- clean up bloody nicks from sharp teeth
- exfoliate dead skin off lips
- stimulate blood flow and oral muscles in speech therapy sessions
- get wrapped in gauze to apply extra pressure while biting down
- apply topical oral gel (if allowed to have it) directly to suspected site of pain
Toothbrushes
We've been through a wide variety of them, and here are the take-aways for what makes a good toothbrush for your special special.
1. Start Simple
Start with the simplest, cheapest, most disposable tools first. The toothette may work for this purpose, especially if you can get them covered by insurance. However, there is something about having twice daily oral care with an actual toothbrush that feels "normal." Work up the amount of bells and whistles in tiny increments. If you even feel it necessary. We tried a battery operated spin brush at one point that only served to frighten and overstimulate. That one is a no for us.
Also a no for us is (shocker!) toothpaste. For one, there are usually sweeteners and flavors added that are a no-no due to diet parameters. Also, swallowing anything - or swallowing improperly, to be exact - can be precarious. This takes a pretty large component of the whole tooth-brushing operation and just deletes it. Keeping it pretty simple. There's no need to worry too much about bad breath or gunky build, though. Keep reading; there's a reason why...but back to toothbrushes:
2. Size Matters
Most are too big for our situation. This is likely a combination of anatomy and compliance. Our sweet girl doesn't open her mouth super wide to begin with, certainly not on demand. Her jaw is not wide enough in the back for her giant molars, much less a regular-sized toothbrush. Baby and toddler sized toothbrushes are still the ideal size at age six.
Of course, the size of your tool will depend on your kiddo and his or her particular anatomy and needs. This is a good place to remind you that you get to break the rules at your pleasure. Outfit your special special appropriately, regardless of packaging suggestions.
Our current favorite for small, gentle-bristled toothbrushes is Guru Nanda Butter On Gums brand. You can get a pack of them here.
We have also have good success with Colgate Baby Extra Soft toothbrush. We grabbed a two pack at the grocery store, but you can get them on Amazon, also.
The the biggest take-away I have now that our special special is six years old is that it's not the tool or the quality of any one tooth brushing session...
It's the frequency that matters!
It's more about moving things around in the mouth often than it is the special features of the tool you choose to use. Consider all the times your mouth has activity in the day: brushing, drinking, chewing meals and gum, talking, coughing/clearing your throat, swallowing... There's a lot going on! Depending on your kiddo, they could be missing out on the activity needed to keep things healthy and moving in there without your help. Now that we know that, the standard practice of brushing twice daily is just not as appropriate for the nonverbal, G-tube fed kiddo, in my opinion.
But not to worry. Simple and seamless additional action can include swabbing the mouth as a part of a breathing treatment, for instance. Use a rag to wipe cheeks and lips, inside and out of the mouth, in order stimulate muscles and movement. A gloved finger can massage gums while you check the progress of teeth. Watch out! You might have someone who wants to participate with extra drooling and biting. All this activity is good. It's precisely why a no-toothpaste approach doesn't have to be stinky! If there's no time for bacteria to sit and populate into a stinky state, then there's not a problem with bad breath.
Speaking of activity, this is is where you can make it fun with...
Chew Toys and Teethers
If you're looking for even more opportunity to help those teeth erupt and comfort a child having to go through it, there are lots of distract-and-play options. Toddler chew toys and sensory chew toys have helped our girl have variety of shapes and sizes and textures to experience that her daily nutrition and other activity hasn't been able to provide. The following are in our current rotation.
As a reminder before I get into the bits and bobbles: I'm sharing about teething for a special special child who is six years old, nonverbal, low tone, and G-button fed. This isn't her first round of teething. There are many toys and tools for teething; this topic is covered well elsewhere in neurotypical children, especially in that first round of teething. What I would like to share are the items we've collected along the way that are still helpful today. You do not need to go out and purchase all of these items, to be sure! And if your kiddo is smaller, I suggest keeping a small, clean tub of the things you discover. You may try something that isn't their perfect fit today, but if you think it has potential, keep it in that tub! It may come back around and be just the thing for the next tooth.
This one is used lots in therapy sessions; it's just long enough so the therapist can rub the gums in the back. The tapered shape is helpful. The stem is good for holding to work on grip.
Dr. Brown's HappyPaci Silicone Pacifier
The only pacifier that stayed in our girl's mouth for any time at all. The hook on the outside was especially helpful for her to hold and push on herself. It is slightly longer than the average paci. Helpful in our case because she has a small cleft in her soft palate, which inhibits her ability to suck. So, this was the only paci she has ever been able to chomp on, somewhat independently.
The stopper is great. Love that safety feature. The perfect little grip for a little hand. We use it today because it is bumpy and stiff enough to simulate all the mouth motions she's missing out on. At six, it doesn't reach back as far into her mouth, but still useful.
Pink Nuby Silicone Teethe-eeze Teether
This has been a favorite over several rounds of teeth coming through. The silicone is very gentle, however the density is so great that it almost feels like a hairbrush, really getting in there to move things around. It's got a 3D quality to it, there are bristles around the top of the curved part, so it's more than just bristles on the larger flat surfaces. It's wide enough that she hits everything at the same time, but doesn't appear as if we are stuffing her mouth in an unpleasant way. It scrapes the tongue nicely too.
Nuby Soft Silicone Gum Massager
Same exact materials as the Teethe-eeze. The double sided tray really focuses all the little soft bristles top and bottom simultaneously around the teeth or gums where it's placed. The curved tray makes it a great toothbrush alternative for the back teeth.
Frida Baby Not-Too-Cold-To-Hold
The sleeve is so smart! I know that makes both caregiver and girly-pop happy to not have to hold a freezing object while she enjoys the cold relief on her gums. This one is newer to the arsenal, and everyone likes it.
A sensory chew toy for toddlers or adults. The newest favorite! This tool is amazing! Mostly because of the size options. There are many small chewy mittens for teething, but not that come in sizes that fit a larger hand. This became a struggle for us when she turned two and outgrew the common chew toys for children. This is the only one that she can operate fully independently and actually gets the teether in her mouth to chew! Every other tool is highly caregiver involved because she doesn't have the strength and coordination to use the tool herself. Additionally, there is a removeable chew ring on top. With that removed, it's still a safety mitten with chewable parts. Ah! I'm in love. Ten out of ten. Would recommend.
Note: the link above is to the available size on Amazon. If you need a size that's not currently offered there, you can find Gummee Gloves on Etsy or on their own website, Gummee.life. For reference, my six year old is wearing a Medium.
Reality Check
Ok, let's be honest. The greatest of all time teether is going to be fingers. That's fine. Super convenient. Totally appropriate for development.
But there is a tipping point. For me it's blood and broken skin. We certainly don't need to add collateral problems to this phase. But at the same time, I have no desire to hinder natural play. Every special and medical mom I've come across strives for an experience that is as close to natural as their special special situation allows. That can be a moment-to-moment call when so many factors go into every decision you make for your kiddo. When we need to give her favorite teether a time out to heal, that's when I'm grateful for these items.
Gardening gloves. These are just thick enough on the finger to give her a chunk of time to play with those fingers. After playing with all the options, we now try to use these mostly BEFORE there is broken skin in the picture. We have also used them to keep Band-Aids or gauze in place while still letting her play with her fingers.
We also like to use the Chewy Glove. This covers the forefinger, thumb, and hand. That is where the majority of chewing and therefore injury is likely to occur. The fabric is perfect for its purpose: thick and stretchy compression material. It stays on well through lots of activity.
Special note: because we have nursing, there needed to be a special physician's order about anything that could restrain. We did all the steps and now even her nurses have this as an option, but that only came after lots of troubleshooting, talking, and subsequent paperwork. Consult all the appropriate parties if this is an option you want to have in the presence of private duty nursing.
We like these because she can still swing her arm around, she just can't reach her fingers to her mouth. When she really needs a break from biting her fingers or has a more intense bandaging situation, these are what we like to use. She gets mad. And I've explained many times why this is necessary. You should see the sassy side eye she can dish out!
A final Note...
After all this troubleshooting and arming yourself with the best that brains and retailers can offer, your special sweetheart is still simply a person. Your special person.
I can’t count the times that I have heard a sound of discomfort, got busy trying everything in the arsenal, and ended up frustrated not knowing what to do to help. Then, simply holding a delicate little hand and talking in a whispered voice to her (not about or around her)... finally created some pause.
Don’t forget the comfort your presence offers. Even if they can’t understand why and what is going on with their bodies, they can know that you are taking care of their hearts. It sucks that things can hurt, but they - and you! - need to feel that no one is alone in this. Not them. Not you.
Whether you find a distinct solution (and I really pray that you do!), or you just end up holding hands through the pain, you aren’t alone. And that makes this experience we share special special.
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