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I just wanted to thank everyone who responded to my request for emergency
help this week.  I really appreciated the fact that so many people took the
time to try to help.  The consensus seemed to be that IV medications and
anesthesias are okay, but oral medications need to be checked for gluten.

One person mentioned that I seemed scared and yes, I was.  My daughter, in
addition to being celiac is also allergic to dairy products, has cerebral
palsy and is on several medications which are necessary to her well being.
In addition to the fact that she had a broken femur and required surgery, I
was worried about all of these very significant side issues. So I really do
appreciate the fact that so many of you took the time to try to make things
a little easier for us.

The
surgery went well, the hospital was extremely helpful and cooperative
in terms of diet, medications, etc.  The nurses provided us with the PDR to
check everything that was going to be given to her.  I did at one point
call Stokes Pharmacy because one of her potential medications contained
lactose.  Stokes would have been able to make it up without lactose, but
was unable to get the powder with which to make the medication in time.
Therefore, the doctors prescribed a different medication.

Someone suggested that in an emergency, pain relief is more important than
avoiding gluten.  I don't agree.  My daughter has a neurological reaction
which makes her unable to function very well.  She is a college sophomore
and normally quite capable of directing her own care.  The slightest gluten
ingestion affects her functioning for several weeks.  Particularly when
being given heavy pain killers (morphine, percosett, etc.) I
 think it is
really important not to cloud the issues... i.e., is she groggy and
uncommunicative because she is getting perhaps too much morphine or because
we have given her a medication with a wheat starch filler?

For myself as a celiac, I can hardly imagine a worse scenario than being
confined to bed with a broken leg and in terrible pain with every movement
and having to deal with the kind of violent intestinal reaction that I have
to gluten.

In terms of diet, we were fortunate to make contact with the chief
dietician, who, although not celiac, is herself allergic to wheat and dairy
(and also a vegetarian).  She was a very lovely woman originally from
India.  She tried her best to get the dietary staff to understand, with
little success.  Finally she suggested that I buy the food and they cook
it.  Fortunately there was an excellent health food store nearby and I was
able to get cereal, so
y milk, rice pasta, tomato sauce, etc. (and the
hosptial reimbursed me for the cost!) It took several days to work it all
out, but by the end it was working well and the nursing staff and dietary
staff learned a lot about celiac sprue.

We are back at home now and all is settling down.  My daughter happened to
be visiting her father at the time of the accident and was an hour and a
half away from home.  I spent four nights sleeping in a chair at the
hospital monitoring everything including possible reactions between her
daily medications and medications administered in the hospital.  She is now
at home, relatively pain free, lying in the hospital bed that we rented for
her.  We also had to get a leg extension for her wheelchair so that soon (I
hope) she will be able to get out of bed and into her wheelchair and
perhaps even get back to classes.  There were so very many issues to deal
with that I felt overwh
elmed at times, but I do want you to know that you
really need to have someone else to advocate for you while you are
hospitalized.  Even the best and most cooperative of hospital staffs (and I
feel this hospital staff was in that category) are not familiar with celiac
disease, nor all the issues that it involves and it is very difficult to
deal with it all yourself. It took a great deal of my time and energy and I
can't imagine being able to do that as a patient.

If anyone is in the area, the hospital was Robert Wood Johnson at Hamilton,
New Jersey.  If you need to be hospitalized and you can arrange it, it
seems to be a fantastic hospital.  (My daughter really loved the therapy
dogs that came to visit her every night, particularly the one in the
skeleton costume the night before Halloween).

Thanks again to all of you.

Jane

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