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.
My Adjustment
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.
Wax Teeth
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.
Thank you Sarah! My precious grand daughter will be going through this. It helps to know what to expect. Your daughter is beautiful!
Thanks!
I am so very happy you were able to get her “teeth” so young! Not so with me back in the 60s-70s. As an adult with ED (like your husband), I would caution you on the number of visitors in the room when she is at the dentist. I had long lines of interns, dentist, students, etc at John Hopkins and Duke medical/dental. Scared me pretty bad to be “on display”. I have two ED children and I only do private dentistry for that reason.
Thanks, I will keep that in mind. So far she doesn’t mind. She will let me know if she does.
I know how you feel when it comes to being in the public eyes and yes its scary when people scare at you while others ask you questions at a young age like you know all the answers.i have Ed and the syndrome i have is rare or so not sure but its called chrostestoma syndrome
This is so lovely to read! The wax teeth look amazing. I am 19 and also suffer from ED and am currently going through the process of having implants. I can understand why Hazel is not wanting to wear the denture, I hated wearing them at first as it was so weird and uncomfortable in my mouth! I also have tradition of going to get chocolate milkshake from McDonald’s after my dentist appointment. Hope Hazel gets on well with the dentures.
Jessica, I’m so excited to hear you are getting implants! It’s a process that takes much time and that you have to keep on top of, like if you need a new set made, but totally worth it!!!
Good luck on your implant journey!
Good luck with the implants. My husband has had his for almost 20 years now without issue.
What an amazing little gal you have! This whole story makes me think of what my mom went through with me. Little Hazel totally reminds me of myself at that age. I had my first set done when I was between 2-3. My poor family had quite the time getting me to keep them in. 🙂
I’m 30 now and have a little guy of my own (we decided to use IVF with PGD to screen for XLHED so he is not a carrier). Just know that she will be an amazing strong woman and all you are doing now to support her will really impact her through her life. Moms and dads of kids with ED are AMAZING! You guys help us keep positive and see the good in ourselves and situations we face.
Thanks for sharing Hazel’s story!
THanks!
What is the suitable age to begin teeth implantation in ED patients
Here’s a resource that our dental experts wrote that addresses your question as well as what dental options they recommend for different ages. Generally speaking, they recommend that you wait until the jaw has full grown to assure the best success. Read more about this in our guide found at https://nfed.org/learn/library/parameters-dental-health-care/. ~ Jodi, Director, Marketing and Communication, National Foundation for Ectodermal Dysplasias
Love this so much. My husband has HED and one of our two boys is affected. I’m so so nervous for the road ahead. My husband is 29 and is still struggling with multiple dental issues. I’m having such a hard time finding a dentist who is knowledgeable about HED and willing to help. Love hearing these positive stories. Good luck!
The dental challenges are life-long for sure and we hear you! Check out these tips for finding a doctor or dentist: https://nfed.org/treat/choosing-doctor-dentist/ and here: https://nfed.org/blog/tips-for-finding-a-doctor-or-dentist/. Perhaps they will help you find someone. Also, we do have a network of NFED Dental Treatment Centers. I’m not sure where you live but your husband might consider going to one of our centers which has a team of dentists who have treated ectodermal dysplasia. You can learn more here: https://nfed.org/treat/dental-treatment-options/dental-treatment-centers/. Let us know if we can help you in any way. You can contact our office at 618-566-2020 or info@nfed.org. Good luck! ~ Jodi, NFED Director, Marketing and Commuinication
My husband for his implants actually used the NFED treatment center in North Carolina. He made several trips down from Northern Virginia to get his implants from them. He said it was worth it. Perfectly normal to be nervous. I think posting to the facebook groups for NFED and asking where others are seen can be helpful too.
Hi Melissa,
Sarah’s husband here, if he would like someone just to talk to about having HED, dentures, implants, and any other HED related questions, please feel free to contact me. We all have tricks of the trade so to speak and anything I can learn from others as well as share, let me know. i’m in the NFED network database or if you contact Jodi, she can give you my information.
Thanks for reaching out, Everett, and offering support. Melissa, I am happy to connect you and Everett should you desire that. Just let me know at jodi@nfed.org. Thanks! Jodi, National Foundation for Ectodermal Dysplasias, Director, Marketing and Communications
I have cerebellar hypopituitary ECTODERMAL dwarfism Alopecia with its DENTAL ravage feature. Luckily thanks to full mouth experimental dental prosthetics I have avoided dentures and implants.
https://www.liherald.com/islandpark/stories/a-dental-miracle,93684
So lovely to read this each time for a new child.
I say in my mind one child feeling better, hopping one day those dentures won’t be necessary any more
Dentures look beautiful! Great job Dr. Jenny! I am a general dentist and have never seen an edentulous child (without teeth). My concern is that this child will continue to outgrow these dentures. So, I am wondering how often will she need adjistments and new dentures. And also I am interested to know the longterm treatment plan.
I will let Sarah answer your questions about Hazel’s specific treatment plan. However, typically, we anticipate that a child will need dentures replaced about 18-24 months as their jaw grows. Also, depending on the person, they may need to transition to dental implants once their jaw has finished growing. You can learn more in our Parameters for Oral Health Care, https://nfed.org/learn/library/parameters-dental-health-care/ which outlines recommended care by age. It’s written by our panel of dental experts. ~ Jodi, NFED, Director, Marketing and Communications
Yes she will outgrow them, we expect every 18months to 2 years. That was the case for my husband. We will wait until she stops growing before we get implants. She has one top tooth currently. Her x-rays show at least one more top tooth, and 2 12yr old molars. We are preserving her one tooth and the denture will fit around it. NOt sure yet if her bottom gum is big enough to hold her bottom denture. We are hopeful as it will help with chewing. My husband had to start with the top denture only.
Yes she will outgrow them, we expect every 18months to 2 years. That was the case for my husband. We will wait until she stops growing before we get implants. She has one top tooth currently. Her x-rays show at least one more top tooth, and 2 12yr old molars. We are preserving her one tooth and the denture will fit around it. NOt sure yet if her bottom gum is big enough to hold her bottom denture. We are hopeful as it will help with chewing. My husband had to start with the top denture only.
Hi Sarah,
We have a similar story such as yours, my son (age 9) received his dentures at a young age from the University of Chicago, Dr. Stanford. However he does not wear his lower for 2 reasons, I believe his ridge is very thin and there is no other teeth to use as an anchor for the denture. Does you daughter have any lowers and if not can she wear the lower denture?
Hi, Sarah. We’re glad to hear Dr. Stanford treated your son. He’s one of the best and the chair of our Scientific Advisory Council. Without any natural teeth in his lower jaw to sustain the bone, you are right in that his ridge would be thin. Have you talked with Dr. Stanford about the issue? Perhaps he can help find a solution. Good luck! ~ Jodi, NFED, Director, Marketing and Communications