It’s a little overwhelming having a 5-year-old getting dentures. I remember checking her in for her first appointment months ago and the receptionist says, “She’s four?” It was a weird feeling. And I knew I’d have to get used to it.
Hazel is affected by x-linked hypohidrotic ectodermal dysplasia (HED) like my husband, Everett. Her older sister, Addison, is also affected.
We were pleasantly surprised that the resident at the University of Maryland School of Dentistry, Dr. Jenny, has fitted dentures for other children. She is great with kids and Hazel warmed up to her quickly. She showed everything to Hazel: the molds, the tongs to hold her mouth open for the photos and the photos. She’s very patient.
At the first appointment, I was thankful that she explained everything to me. Everett, having dentures already, would mention that he already knows the process. But, she kept talking any way for my benefit.
At the National Foundation for Ectodermal Dysplasias (NFED) Advocacy Day on Capitol Hill in July, we met another family affected by ectodermal dysplasia, Peter, Christine and Henry. Henry is the same age as Hazel and about to get his first dentures. Kids sense our emotions, and spending the day with Christine, to hear her talk and feel the excitement about Henry’s first set of dentures was amazing. I don’t know how she does it. I need to get there for Hazel, but also accept that it’s okay for her to feel nervous and have her feelings.
Our Rock Star
Hazel has impressed us. She’s been great about getting shots, having ear wax cleaned out at the ear, nose and throat (ENT) doctor and about going to dental appointments. She doesn’t fuss or complain, just accepts it. She did the same through the three mold fitting appointments for the dentures. Hazel had a smile most of the time and cooperated with Dr. Jenny, complete with high fives at the end.
At the second appointment, she even had an audience. The dentists and residents wanted to see this (then) 4-year-old in action, sitting so well. My mind was blown! I’m sure as she ages there will be some fights and “I don’t want to go” fits. But, for now, we have a tradition of an ice cream date after the appointments.
Choosing Her Dentist
Everett had his last set of dentures done at Maryland dental school. It was half the cost of going to a dentist in private practice. I initially wanted to take Hazel there. Our primary care physician agreed, so did our ENT. Our dentist recommended that we meet with a prosthodontist colleague. It took awhile to get an appointment there as they debated at the practice on what to do with a 4-year-old.
Our dentist wrote a letter to them about Hazel, talked on the phone with them and did the x-rays. When we finally met the prosthodontist, he, too, recommended the Maryland dental school. He worked down there one day a week and said they had more resources for Hazel’s care and have experience in billing to the medical insurance.
What I Learned
I do feel that I should have asked more questions about the billing process up front. After being told they will bill medical when we went to setup the appointment, at check-in the receptionist said, “We don’t take medical info.” That had me worried. Dr. Jenny said, “Give the info anyway.” We eventually talked with the billing manager who explained that she will bill to both the medical and the dental insurance.
We did have to pay half in order to get the dentures ordered, which we did. We could have waited for dental and/or medical insurance to respond or pay. But since that can take awhile, we paid to get the dentures sooner. Dr. Jenny provided a letter for medical insurance to justify the need. She had done this previously.
Getting the Fit Right
Hazel was to get her dentures on September 18 but we have had a few delays. September was a crazy month. We still haven’t ordered the dentures yet. Hazel is sad, but I think it’s because she wanted the post appointment ice cream! We have had two appointments for the wax mold fittings and have one more soon.
When I first saw the wax molds with the upper and lower teeth in them, I initially thought “how cute.” Hazel has a small mouth and they are so tiny. It was exciting.
But seeing them in her mouth was emotional. She had a big, happy smile on her face. Usually, Hazel keeps her mouth closed when she smiles. I don’t know if she does that intentionally with having one tooth or just the face she likes to make. I know self-awareness starts young.
I remember thinking how beautiful she looks with teeth and how much it changes her looks and her jaw line, but then thinking, teeth do not make her beautiful. She’s beautiful already. My next thoughts were how much seeing the wax denture molds are a reminder that she’s not a normal child with teeth and how much she will have to endure with the dentures and eventually implants and who knows what else.
All of her preschool classmates love her. They greet her with big smiles and give her hugs goodbye. It’s hard not to think about what happens when she starts wearing the dentures? They don’t notice she is different with her one tooth. The dentures will make them more aware. How do you educate young kids about their friend with the rare disease? All of these thoughts ran through my head in those first few moments of the wax molds in her mouth with that amazing smile.
At the first fitting with the wax teeth molds, it had the upper and lower teeth only. For the second fitting, the back teeth were added in. To watch Dr. Jenny work to make sure the teeth are the right size so they look normal and so that the bite lines up so she can eat was fascinating.
At the last appointment, she used a Bunsen burner to heat the wax and remove and readjust the teeth on the bottom mold to get a better alignment. With a tiny mouth and not much gum on the bottom, we are not yet sure if she will be able to use the bottom dentures. Time will tell.
Next Up: The Dentures
I am looking forward to her being able to eat easier. She has sensitive gums and there is not a lot she likes to chew. Occasionally, food gets stuck in her throat, which always gives me a good scare.
Hazel says she is nervous and doesn’t want to wear them, which is understandable. We keep telling her how they will help her eat, help with more saliva in her mouth, and help her talk more clearly.
She still amazes Everett and I with her patience and willingness to work with Dr. Jenny. She has a handful of stuffed animals that come with us to the dental school and an IPad to pass the time while Dr. Jenny adjusts the molds.
The post appointment ice cream treat also continues. I am hoping after this next fitting, appointment #6, the dentures will be ordered.
(Editor’s Note: Read the second installment to see how Hazel is doing with her dentures!)
Sarah Hamilton is a guest blogger for the NFED. She lives in Maryland with her family and is a mission planner for two NASA Deep Space Missions. You can read about her love story with Everett here: Mr. and Mrs. Weirdo and Goofball.