Medical

I feel like I'm hitting a wall again, when it comes to Brennyn's medical situation. Yes, we have a diagnosis: ADULT Syndrome, a rare form of Ectodermal Dysplasia and we have been referred to all the right specialists. However, nobody seems to be able to tell us what to expect, what to be on the look out for. We visit the specialist, they check Brennyn out, say that they have never actually seen a child with ADULT syndrome and then act like it's not a big deal. Use these steroid creams for her skin, we'll see you again in 3 months. The creams were working, but I worry about the long term effects of steroid cream (the word is that if you use it lightly and only when needed, shouldn't be a problem). What if your child needs the cream everyday because it's the only thing that keeps her from itching her skin until it bleeds?? My poor girl has a rash today and I had to resort to Benedryl (another medicine I don't like to use, but again, she was so itchy, we had no choice). I'm also worried about her teeth. How do we know if her Adult teeth will be okay?? Often people with Ectodermal Dysplasia's lose their teeth early. I'm just a worried Mama, who would give anything to talk to someone else with ADULT syndrome (not many out there, unfortunately). Thank goodness for the NFED (National Foundation for Ectodermal Dysplasia), without that website, I'd be lost. They are an amazing source of information for anyone dealing with an Ectodermal Dysplasia diagnosis. I'm not complaining, we've been so lucky to have an actual diagnosis and to be treated at one of the best Children's Hospitals in the World. It's still hard sometimes, that's all. It's hard when you just want to make your child better. It's hard when you don't have all the answers. It's hard when you don't know how this diagnosis is going to affect (or is it effect, my English skills have gone down the tubes these days) your daughter as she grows older. It's hard when everything seems to be out of your control and you just want answers. Brennyn, on the other hand, is amazing. She never complains, even when her skin is so itchy it's turning red or she has to spend another day at Sick Kids. She is one special little girl, but everyone who meets her knows that!!!