5 year old just diagnosed

[Suzanne Thompson]

I'm so glad to have found anyone who has even heard of this before.  We found out 2 days ago that my son is missing at least 6 adult teeth in front, they will do a panoramic x-ray in 3 months to find out if there are any more missing. Google doesn't ever lead anywhere good, except hopefully here.  
I just don't know what I am supposed to do.  The dentist recommended that we get a genetic work up so I called our Children's Hospital and essentially left a message.  My pediatrician says he doesn't appear to have any syndrome but to get into genetics because it's so rare.  I guess it's not on my schedule.
I am not sure where to go from here.  Do you rush into the specialists and have them look or do you just wait until you know more?  What is typical treatment at such an early age?  And....drum roll....is any of the covered by insurance?  We have state funded insurance (Massachusetts, so MassHealth) so I'm not sure if that is good or bad.  If I need to save every penny for his teeth then I would like to start ASAP.  
Any advice would be appreciated.  Thanks for reading.

Suzanne

[Alexis Mena]

Hi Suzanne. I don't have a lot of advice since we are basically in the same boat. We also live in the Boston area and my daughter will be 5 in a few months. We already knew she was missing two baby teeth (the one on either side of her top front teeth) but she didn't get her first x-rays done until yesterday. We did a panoramic x-ray and she only has 9 permanent teeth (6 on the top, 3 on the bottom)! I'm still in shock. I go back and forth between reminding myself that things could be worse and it's not something that's dangerous for her, and feeling filled with worry about all the procedures in her future and wanting to protect her from discomfort and lack of confidence. 

From what the dentist said, our next step, like yours, is to see a geneticist at Children's (like your son, she doesn't have any other health problems indicating a specific syndrome). He said this will be a long process that involves an orthodontist (to move things around) and periodontist (for prosthetics) but that for now there isn't anything they would actually do. He said it would be several years before they actually start any time of treatments, and that the first time this would become an issue for her will be when she's 6/7 years old and notices she isn't losing as many baby teeth as her friends. 

Re:insurance, I'm not sure. But one tip of advice I saw elsewhere is to be a strong advocate and remember this is medical, not cosmetic.

Good luck and keep us posted. I'm looking forward to reading everyone else's stories and learning from others' experiences.

Alexis