The following guest blog is second in a series written by Sarah Hamilton, the mother of Hazel, who is affected by x-linked hypohidrotic ectodermal dysplasia. Read her first blog, First Dentures for Hazel: Her Mom’s Perspective.
By Sarah Hamilton
Hazel finally got her dentures! And the tooth fairy paid her a visit. When you use a dental school (University of Maryland School of Dentistry in our case), the process can take longer since the dentist is a resident who also takes classes and has other school obligations. But for a five-year-old, I think it is less overwhelming to have the appointments spread out. It is exciting for Hazel to finally get her dentures. The entire family is excited for her and it was worth the wait.
In addition to getting her dentures (she doesn’t like the word denture and wants us to call them teeth), we got the letter of denial from our medical insurance. When you read the National Foundation for Ectodermal Dysplasias (NFED) Insurance Tool Kit, it recommends getting the approval first, so we went out of order. We just didn’t want to delay the process any further. We will write letters and more letters.
I find it so easy to speak up at work, but harder to speak up and advocate for my children. But I’m learning, too, because I need to. They are too young to speak up and I need to be an example for them.
After the molds were complete and while we were waiting for the appointment to get them, Hazel told us she was nervous about getting them. She also told us she would not wear them at school. She’s at preschool and the kids have asked about her one tooth. She told them she was born that way, she has a rare disease.
But they all love her. You can tell by the way they say hi and bye and interact. She’s young enough to be self-aware and not quite old enough to want to “look like everyone else” with teeth. I’m worried she won’t wear her teeth at preschool as it will make her different since all the kids are used to her without them.
The Surreal Life
It’s a weird feeling. I married into ectodermal dysplasia. It’s not new in a sense. But the reality of your kid having to have dentures and finally getting them makes it more real, what she –we- will have to deal with throughout her life.
It’s surreal, to see your child with dentures. Maybe it’s surreal because I don’t think about my husband, Everett, who is affected by ectodermal dysplasia, too, having them. He takes care of himself and I don’t have to think about it. We’ve been carrying around cooling towels and water since Everett and I have been dating since he cannot sweat.
At the same time, I am excited for Hazel and that the technology is available to make them that tiny. I’m hoping she will wear them and eat with them. I don’t worry about her overheating though. Hazel has choked on food a couple of times and that scares me. That fear of choking is always there. I didn’t realize that not having teeth also affects saliva. Everett explained she’ll start producing more when she wears the dentures that, too, will help her eat and have the food not get stuck.
What Does the Future Hold?
At one of our last appointments, Dr. Jenny explained that Hazel’s bottom gums are so small that she’s worried there may not be enough to get good suction to keep them in. This means that we may need to get implants as a child, before she stops growing. This is not our first preference. But I wouldn’t want to wait until she stops growing to get the benefit of the bottom dentures and chewing.
But now that she has them, she prefers to wear the bottom ones! And to our surprise, she is even wearing them some at school after she said she didn’t want to. We have had one appointment to adjust them, and we will need another one. She doesn’t like to wear the top ones because of all the saliva she is now producing in her mouth and they need adjusting in one spot.
Speaking But Not Eating
Hazel has a tiny mouth, and had it been any smaller, they would not have been able to make the bottom dentures. She has learned to talk with them in and it’s amazing how much more clearly she talks. She hasn’t really tried to eat with them yet. It’s a fight to get her to. She doesn’t want to eat with them.
It’s also a fight to get her to keep the top denture in for a good amount of time. I don’t want her to get the mouth sores and be in pain, but I know the more she wears them, it will help Dr. Jenny to look at her mouth and see what needs adjusting.
We do think some Poligrip will help her learn to keep them in and eat, but she doesn’t like the feel of it. They used it to fit her molds. I want her to like her teeth, so I’m trying to balance making her wear them vs. her wearing them when she wants to. To let her have some control. It’s a hard balance. I don’t want to push too hard and have her not like them and as a result not wear them.
I remember being worried about how do I get excited for her, but it’s been easier than I thought! She’s beautiful without her smile, but that smile with teeth is so incredibly beautiful. She glows with it.