20 August 2007

E's visit to the dentist

The dentist visit went GREAT!
Firstly, and of least importance, I WAS FINE. I really had to push myself to go, was convinced I would panic & make a fool of myself, and E would not be seen, but I did just fine.....I had
"moments" and the worst was picking them up from school early, and J having to pee in the carpark, lol...but another TADA for me.
The dentist visit itself gave some great results....but maybe some background info first.
E has Ectodermal Dysplasias (ED). It is basically a genetic disorder that effects the ectoderm (outer layer) of an embryo....you can google it, but she has a very mild form. It is still a bit of an unknown disorder, but generally effects skin, hair, teeth & nails. She was diagnosed when she was 1, and due to no history from either of us parents, it seems to be just a freak mutation at conception. We are blessed thus far, that her main problem is her teeth. They are conical shaped, and there was a big possibility that she would have next to no second teeth. Her nails are paper thin, and she gets a lot of those sores/cuts around the edge. She had very little hair, until about 18 months, but she now has a full head of the stuff :-) albeit thin & a little wirey & hard to manage. She has occasional skin issues such as excema....but considering some of these kids have no sweat glands...it is nothing, and fairly common these days. She has also had recurrant ear infections, and has had grommets put in her ears.....but so has my son, and he is not ED.
Anyways...back to the dentist. We go to the top paed dentist around these parts, and he is at Westmead Dental Hospital....due to both these things he is very hard to get into, but he is FANTASTIC! So after a long wait....and 2.5years since last seeing him...today was the day!
He checked her out, and then sent her for an x-ray. The last xray she had done she was quite young and wouldn't keep still, but it didn't look good as far as 2nd teeth go. But todays showed much better results....she is only missing her 4 bottom front (2nd/adult) teeth, and 2 incisors. Her 6 year molars are there waiting to come through, which he said looks positive as far as the older ones developing too. Her teeth are at the "age" of a 3.5 year old, which he said was not a worry. The ones, without adult teeth, were the best outcome, as their roots are long and could be built up to "look" more in place...and at a much later date, implants would work well. So at this stage we are doing nothing. We will have another appointment in a year. But if I feel something needs to be done (caps most likely) to call in the meantime. She apparently is called "shark-girl" at school...it breaks my heart...but, for now, it is more "cool" status. than teasing....we'll see how that goes...and I'll try not to be tainted by the tauntings I got at school for my teeth issues (which was dodgy dentist induced, NOT genetics......well actually a bit genetics, but not ED). At the moment she has been invited to just about every party happening, so as long as she continues to do well (and I know kids tease for anything and parties aren't the be all and end all) we will continue to go on as normal, and tackle things as they come :-)
Best get these kidlets to bed...and stop avoiding the housework :-)


Kelley NFED said...

Hi. My name is Kelley and I work at the National Foundation for Ectodermal Dysplasias (NFED). We are a support group that provides emotional support and financial assistance to families affected by ED syndromes. I would love to send information to you on ED. Please contact me at kelley@nfed.org.

Kirstie said...

Thanks Kelley. I am actually in Australia. (If I am right in thinking the NFED is US based)
We have a pretty good system here, all E's dental work is covered until the age of 28.
We currently have no other problems that really affect her. *touch wood*