Hi there, so glad I found this forum. I have a 4yr. old daughter who has Ectodermal Dysplasia and was born missing almost all of her teeth. She has 10 teeth total and the rest I am told need to be filled in with implants after bone grafting as well as a sinus lift. I'm concerned because she's only 4 and I know her jaw isn't finished growing yet, but the oral surgeon as well as prosthodontist at a leading University medical center both agree that if she were to wear a partial denture or something of that sort, then it would only wear her jaw bone down even more. I don't want her to be teased in school because kids can be terribly cruel, and the dentists agree that we should do this now, but I feel VERY concerned that this is just too young and that since she's already going to need bone grafting done, why not wear a prosthetic partial denture or something and get the grafting done when she's a teenager or something. Would that be causing much more extensive grafting procedures in the future, or will it be the same no matter what? Also, does it have to come from her own bone, or could I be the donor myself and save her that extra surgery? I'm also concerned because as her jaw grows once it recognizes it has the implants in, they will be displaced and need to be changed out frequently. Thanks for any info. you can give me!

Hi Keelewinter,

I personally am not very familiar with Ectodermal Dysplasia. I know it's an abnormal development of certain parts of the body and the teeth being one of them. I have had only a few patients with this condition and their cases varied alot.

Your daughter should have a team of only pediatric dentists who are familiar and experienced with treating young patients with ED since there are generally other physical concerns to contend with that can cause complications during certain procedures if preventive measures are not taken ahead of time.

There are usually options in short and long term treatment and it is not unusual for these patients to have removable partials at the young age of 4. But there needs to be adequate bone for these partials to be worn properly. Orthodontic treatment is sometimes done in the teen years to line up the teeth in the best positions prior to any permanent replacement of the missing teeth.

Her dental treatment has to be designed based on her particular situation as there is no one treatment plan fits all with ED patients. Her dental condition most likely needs intervention now but what exactly, I don't know. She will be monitored closely throughout all phases of treatment and the course of treatment will be adjusted as she grows up into adulthood.

Only an expert in the field of pediatric dentistry can answer your questions intelligently. I can tell you that you are concerned about all of the right things!!

I'm sorry I could not be of more help to you. Perhaps someone else will read this who has experienced it themselves and offer you some personal insight. My suggestion to you is to definitely seek pediatric care for your daughter (perhaps you already have) and question every comment/suggestion they make until you feel confident on their course of action.

Someone is always here to listen and lend their support. This is an awesome community of big hearted people! So please keep in touch with us.....

Bryanna ~'.'~