Trevor has JEb-H and we never were able to find a pacifier to work for him.
The bottle nipple also ripped his mouth apart. We dropper feed him until a
g-tube could be surgically put in.

Holly
----- Original Message -----
From: "jadedgeneration" <no_reply@yahoogroups.com>
To: <butterflychildren@yahoogroups.com>
Sent: Friday, October 22, 2004 3:04 PM
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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http://groups.yahoo.com/group/butterflychildren
> Email the group - butterflychildren@yahoogroups.com
> Email the moderators - butterflychildren-owner@yahoogroups.com
> EB websites: http://www.debra.org.uk - http://www.debra.org
>
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>
> Yahoo! Groups Links
>
>
>
>
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>
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>