Hi Erin,

I had a niece who had Junctional EB and I know she had an Haberman feeder
for her drinks but to my knowledge she had a normal pacifier. At the time we
weren't aware you could get a pacifier but that was 4 year ago.
Welcome to the group. Sorry its a bit late.

Love Rachelle


-------Original Message-------

From: butterflychildren@yahoogroups.com
Date: 10/22/04 21:11:03
To: butterflychildren@yahoogroups.com
Subject: [Butterfly Children] Re: products made for infants with EB?


Junctional EB would be a lot more severe than what I have had to deal
with, in fact taking care of skin with Simplex and the more severe
forms is practically like having a different condition completely. I
would recommend the other list - ebworld.

All the best.
Dee

--- In butterflychildren@yahoogroups.com, "jaeriah03"
<jaeriah0325@h...> wrote:
>
>
> Junctional Epidermolysis Bullosa with Pyloric Atresia she was 3
> months old on the 14th, she is very uncomfortable.
> Thans again, Erin
> --- In butterflychildren@yahoogroups.com, jadedgeneration
> <no_reply@y...> wrote:
> >
> > Hi Erin,
> >
> > What type of EB does the baby have? I can't offer you much advice
> > personally, as I've never been around a baby with EB - just been
> one!
> > There are other mailing lists where there are parents who may be
> able
> > to advise you. I don't know if you're a member of any other
lists,
> if
> > not I would recommend http://groups.yahoo.com/group/ebworld and
if
> > the baby has EB Simplex, also
> > http://groups.yahoo.com/group/ebsimplex2 where the discussion is
> > primarily about this type. I don't know of the lsist (if any)
that
> > are dealing only with other types.
> >
> > I hope those URLs work, it's been a while since I visited any
other
> > EB lists.
> >
> > Sorry I can't be of assistance.
> > Dee
> >
> > --- In butterflychildren@yahoogroups.com, "jaeriah03"
> > <jaeriah0325@h...> wrote:
> > >
> > > Is the a pacifier made for infants with EB?





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