[AECircle] New here but not new to AE!

[Roselyn Parker]

Hello, my name is August. I was born with AE, although they didn't
know it until I was about 6 months old. This was back in 1984, so they
really didn't know a whole lot about the disorder. Luckily they had
figured out to treat it with zinc a few years before that, which is
why I'm here today. :)

I've read a few accounts of children who seemed "brand new" as soon at
they received treatment. The same happened to me back then. The doctor
who diagnosed me happened to have worked at the Mayo Clinic for a
while so he'd actually heard of AE. He sent my tests off but suggested
my parents try the zinc just to see if it worked. The story goes that
I was better even before the results got back!

I can't say it's been easy my whole life. I've always been sicker than
my brothers, and I absolutely hated taking zinc when I was a kid
because it upset my stomach so much. Can't say I love it today, but at
least now I'm old enough to realize it's good for me.

Two recent developments in my life (one awesome, one...not so much):
Today I am 14 weeks pregnant with my first child! Although the first
trimester was NOT easy (I lost 23 lbs from morning sickness) I seem to
have settled into a good place now.

..Which makes this so much more frustrating. Last night I woke up with
these awful raised and bumpy rash things on the inside of my thighs.
The only time they don't hurt it to have my legs spread as far as I
can. Needless to say, sleep is not easy! I've seen enough pictures of
active AE to know what these are, but I don't understand why I'm
having them. I am on super-mega-prenatals with all the zinc I can
handle....why am I having this problem now when everything has been
calm for years?

Anyway...maybe I just wanted to complain to people who understand. I
was excited to see this group exists. I see it's mostly about kids
with AE, but I'd love to meet people my age as well.

-August

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[April]

Hi August!
Congratulations! I wish you a healthy happy baby.

As for your leg rash, it seems that maybe it's a part of pregnancy for
someone with AE. I know the geneticist said my daughter would be fine
unless she had a really rapid growth spurt (puberty) or became
pregnant and during either of those she would require a good deal more
zinc. I'm thinking that maybe if you can, you could try to take your
zinc 3 or 4 times a day so it'll be a little easier to handle. Make
sure you're getting enough by weighing yourself and doing the
calculations for your zinc requirements (which will probably change
monthly during this time). Unfortunately pregnancy, even for someone
with normal chromosome 8's, can be a time of strange and annoying skin
conditions, etc. Try some zinc ointment and hyrdocortisone cream on
the rash if you haven't already and see if that helps. We get zinc
ointment at cvs in a little tube. It's just zinc and mineral oil or
something really simple. You could also try to smear on a little
yeast cream too (buy the "7 day treatment" and it has a generous tube
inside). Dot all three on your fingers and rub it in before you go to
bed.

Good luck and hang in there! It's a long nine months but well worth
it of course. :)

-April

[Roselyn Parker]

April-

Thank you so much for your information! I have been putting a zinc
oxide cream on the rashes for the last day and it's been a real
Godsend. Not a cure by any means, but at least I can sleep at night
because it doesn't hurt so bad! This morning I added a little dot of
Lanacane along with the zinc cream and that was very helpful for the
pain.

I'm hearing a lot of different opinions on the zinc + prenatal
(include the opinions of my dad and step-mom, who are pharmacists and
can't even agree with each other). Some say it's fine to add a zinc
supplement to my prenatal, and some say that would be too much. I
guess I'll wait until my appointment on Friday and ask him.

The rashes are purple colored now, so I'm glad I've got that
appointment soon. My mom keeps telling me that it's all probably just
caused by my thighs rubbing together...But even though I can't
remember what this was like when I was little, it doesn't feel like a
heat rash.

Again, I wanted to say thank you, and I hope to be useful here in the
future. :D