Hi Jennifer,
Tara had been on a different oral calcium called Neocalglucon for
several years. She was diagnosed at age 3 1/2 and by the time they
took Neocalglucon off the market Tara was at least 9 or 10. Her
doctor switched her to calcium carbobate pills which we had to crush
in apple sauce and she immediately got sick to her stomach. Then we
tried the syrup form and again she was unable to tolerate it. So we
tried all sorts of other prepartions until a pharmacist told us
about the replacement for neocalglucon which is the calcium
glubinate syrup. We special ordered it and the rest is history.
Tara swears it is exactly the same as the original neocalglucon.
However, you are absolutely right to question whether it is the
calcium causing the upset stomach or something else. I would try the
one I suggest and see if Julie is able to tolerate it better. Does
Julie also take Rocaltrol or calcitrial? Does she need the oral
calcium or will the vitamin D cover her for a while? Can you give
her very small doses of the calcium spread over several hours? I am
sure you have tried this but thought I would mention it anyway.
Linda















--- In apeced@yahoogroups.com, "Orange, Jennifer" <jorange@...>
wrote:
>
> Linda, one more question on this point. How did you know that it
was the calcium carbonate that was causing your daughter trouble?
Julia has been vomiting off and on for a couple months. She probably
started the calcium about three weeks before she started vomiting.
Recently we noticed that she often vomits right after we give the
calcium, but not always. Julia has had so many strange issues that
it is hard to tell what is the cause of any of her troubles.
> Thanks again,
> Jennifer
>
> -----Original Message-----
> From: Orange, Jennifer
> To: 'apeced@yahoogroups.com' <apeced@yahoogroups.com>
> Sent: Wed Aug 15 21:05:20 2007
> Subject: Re: [apeced] Re: Calcium carbonate and nausea
>
> Thanks, Linda. That is very helpful.
> Jennifer
>
> -----Original Message-----
> From: apeced@yahoogroups.com <apeced@yahoogroups.com>
> To: apeced@yahoogroups.com <apeced@yahoogroups.com>
> Sent: Wed Aug 15 14:55:03 2007
> Subject: [apeced] Re: Calcium carbonate and nausea
>
> Hi Jennifer,
> I am glad you have an appointment with Dr. Deal. I think this
might
> help because my daughter cannot tolerate the calcium carbonate
> either so she uses Calcionate Syrup (calcium glubinate) made by
> Rugby Laboratories in Deluth, Georgia. We order it directly from
CVS
> Pharmacy. And she always takes it with lots of food, not on an
empty
> stomach.
> Best wishes,
> Linda
>
> --- In apeced@yahoogroups.com <mailto:apeced%
40yahoogroups.com> , "Jennifer Orange" <jorange@> wrote:
> >
> > Hello everyone,
> > We haven't poseted anything since our initial email searching
for
> > doctors who are knowledgable about Apeced. At that time Julia
was
> still
> > in the ICU with terrible damage to her lungs from pneumonia. She
> is
> > now home, and while still on oxygen, is much better than she
was.
> We
> > now have an appointment with Dr. Deal in Montreal to consider
> immune
> > suppresants. If anyone has any feedback on this course, I would
> > appreciate it.
> >
> > For the last 2 months Julia has been vomiting on and off. We are
> now
> > having problems keeping her calcium down as she seems to vomit
it
> right
> > after we give it. Has anyone else had this problem? Do you know
> if
> > there is an alternative to calcium carbonate that is easier on
the
> > stomach?
> > Many thanks,
> > Jennifer, mother of Julia, 2.5 yrs
> >
>
>
>
>
>
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