By Heather Martin
Our story started in 2010 when my son, Isaiah, was just over a year old. His baby teeth came in a very concerning way, so we scheduled his first of 10 dentist appointments in two years time.
The first dentist shockingly said he didn’t know what the problem was and believed we should cap them. I refused and said I wanted a second opinion. Well, that opinion was given to me three more times that year. I chose to dismiss them all.
The following year was the worst. We saw several dentists who had no answers and didn’t seem to have the time to help find any answers.
Struggling with Symptoms
We were told to cap his teeth a few more times and now we come to the very last appointment we had until February 20, 2019. Isaiah was just over three years old. We really knew at this point he had a genetic disorder. His nails never grew properly, and we were told when he was born it was probably just because he came a few weeks early despite being eight pounds, nine ounces.
Isaiah NEVER sweat. Like ever! He also hated pants because he said they were just too hot, even when it was below 30° outside. He has always had horrible skin bumps that were at times super painful. Through all of those things and his teeth being completely deformed or nonexistent, they just wanted to cap them. I was even told my kid would suffer socially because of me.
Finally Diagnosed
We were done. I wanted nothing more than to avoid doctors and dentists, and that is what we did. We accommodated him and his needs. We had a friend and colleague of my mother and uncle who did immense research and suggested a form of ectodermal dysplasia. But, we could never have it confirmed because at this point, the dentist in my area would no longer see us.
Knowing it was time, we made an appointment for February 20, 2019. There, we FINALLY got x-rays of his mouth and learned that he has only developed four to six adult teeth and only two have come through. None of Isaiah’s teeth are savable.
To have been on such a journey only to find we will now spend even more time fighting a battle so unknown and so unrecognized was harsh but relieving. A wild yet silent thunderstorm.
Heather Martin
Joining the NFED Family
Knowing we have a community of people who understands what we are going through is beyond my comprehension. I have never met another person like my son. Our story has been in the making for nine years, and we still have a lifetime to go.
I truly believe this community will help us engage our own community. We will spread awareness and outreach going forward because of the National Foundation for Ectodermal Dysplasias (NFED). In less than a week, I was not only contacted by email but by phone on her (Kelley Atchinson, NFED Director, Family and Community Programs) personal time. That speaks volumes in itself! I look forward to this journey and becoming involved with this family.
Heather Martin is a guest blogger for the NFED. She lives in Georgia with her son, Isaiah, who is affected by ectodermal dysplasia.
Share Your Story
Heather,
I know exactly what you are talking about and went through!
My daughter has the same thing.
Her pediatrician told us that her teeth looked problematic and to seek out a good dentist.
We went to some dentists only to be told that they had no idea what to do!
And they threw up their hands.!
I was so upset beyond words.!
It’s a very traumatic experience to go through with your child!
Finally a friend told us about children’s hospital in DC.
We took her there to see some dental specialists who diagnosed it right away.
Of course, I was very upset, but they were wonderful and told us that they would help us manage this and resolve her problems.
At Children’s hospital we found a wonderful dentist who held our hand through the process. He made braces with artificial teeth for her to wear for years while she grew and would be old enough for implants.
He took special care of her and was always there for us when problems arose.
And at the right time he directed us to the proper specialists for her implants.
Today she looks great.
I’m happy that we were able to find the right doctors.
I would suggest to anyone facing this problem to go to a large city and find the right specialists to handle this situation.
The problem is that so many don’t know what is available out there.
I do hope you have found the right doctors now, perhaps in Atlanta?
Good luck to you.!
Hi, Selma. Thanks for sharing your story! We are glad that you and your family were able to find doctors who can help you. We agree, that it’s so important to your care. Let us know if we can ever help you! ~ Jodi, NFED, Director, Marketing and Communications