Comments | timecankill: Aplasia Cutis Congenita

timecankill

Aplasia Cutis Congenita

Nov 12, 2008 18:18

I wanted to make an update about Holden's dermatologist visit today. He has finally been diagnosed with Aplasia Cutis Congenita.I mentioned this some time ago after I had done my own research and found this. It is so rare, more rare than his multiple food allergies, heh. For a refresher, or for those new to my journal, Holden was born with 3 areas ( Read more... )

holden

Comments 17

lindiohead November 13 2008, 19:36:24 UTC

Congrats on finding out what it is! I'm hopeful for your and holden's future!! :)

sapphire_kittum November 13 2008, 23:56:36 UTC

I'm glad that you've got answers now, it must be such a relief.

sunny_skies November 14 2008, 04:20:01 UTC

I'm so glad you finally got a conclusion on this. It sucks though that you were right and it seems like they weren't really listening to you considering it's your child.

coopers_mom November 15 2008, 00:47:59 UTC

It must feel like such a relief to know it is something, and moreso to know that you weren't being crazy, paranoid, overreacting or any of those other things that doctors often make parents feel like because they are not "experts"

((hugs))

he sure is a cutie pie!

timecankill November 15 2008, 01:20:59 UTC

i do feel so relieved!
it is good to hear from you, it seems like its been ages!
how are the boys?
i dont get to check my friends page hardly ever these days..

mrskatieleigh November 16 2008, 03:04:45 UTC

Wow, I'm glad that you were able to get to the bottom of this finally. Thanks also for posting the information! It's all pretty interesting. I noticed in that link you have for ACC that it's semi-treatable? Something about applying silver sulfadiazine. Have you guys done something like that before? I also noticed in the article that it would heal on its own over a period of several weeks or so and that it would finally turn into a hairless scar. Is this what's happened with Holden? Judging by the pictures, that's what the three patches look like to me. Or am I just crazy ( ... )

timecankill November 16 2008, 03:10:20 UTC

no, we never did use the sulfadizine because they didn't diagnose it as such.. so frustrating. i am not sure what that would have done, his is completely healed and was since about 2 weeks of age. they were kind of like wounds on his head, they went in instead of out the way they are now as the scars.
thank you, i really do hope i can help someone else. it is such a scary thing dealing with things you know nothing about.. especially when its your kid ya know?
and yes! i would love for us to find some time to get together. i cant believe its already about to be christmas again, it seems like yesterday it was christmas last year. time flies so fast!