thanks for the reply, no she has not had any shots or meds at all. i am
breastfeeding and wonder if i am giving her something she might be
allergic to. it would be nice if that was all it was....guess we will
find out
                                         becc

 I haven't used it.  Until someone comes along who has experience with it,
here's one website.

(While I think of it, when the Dr. gives you the prescription (next
Tuesday?)  ask if they have a Printout or Website wrt. phenobarbitol (*Note
spelling), *or ask the Pharmacy where you fill it for a printout. Normally
my Pharmacy gives me a printout with each *new prescription, explaining how
it's Used, what to avoid (usually stopping promptly or missing doses without
help from the Dr.),  and there may be Special Instructions wrt.  Children
based on her Age.   *Make sure the Pharmacy puts her Age on their records
too.)

  I went to http://efa.org   (Ep. Foundation of America) site, click Tools?
and Bookmark or Favorites, and then that site will be available under
Favorites on your computer without needing to type it each time. One of the
entries is Medications (click it), then Children and Medications. You can
scroll to Pheno from there and click it.   It didn't say anything of special
interest wrt. children, so info. from the Dr.or Pharmacy, based on her age,
would help (since there might be something regarding her Age that isn't on
the General EFA site above).
.
   Each of the sites there, now has a 'printer friendly'  button at bottom
of the page, if you want to Print a copy of anything.   Use the Back Arrow
at top? to move back then to index.
   (I looked down 'Children and medications', 'side effects', and 'history
of antiepileptic medications'  but didn't see anything specific to Children
or younger med. users.   That's why I hoped the Dr. or Pharmacy. would have
something for you.   Depending on their age, sometimes they have a Liquid
form of a med. that might be mixable with apple sauce, or milk? or juice. If
the tablets are solid, they could tell you *if the tabs could be crushed and
put into food or juice-  some *can't.   My pharmacy was a good source for
most questions I had with my pills etc. as an adult, so if your Dr. doesn't
give you Lots of info.  the pharmacy can be reached by phone or in person
easier sometimes to ask about how it's going for you.)
   Several of the medications have different Symptoms if there are
Allergies or reactions to particular meds.   If she's too young to be able
to tell you about some of those, it's handier to have a list of whether to
watch for a rash, reactions in mouth, etc. to look for. (Since she's already
got that 'reflux' and other reactions, I'd like them to have something *for
you, so we could tell if a reaction was from the New Med.  or still from the
cause she has that's producing the Seizures and Reflux, or whatever she's
having that 'we're trying to treat'.

 So far as I know Pheno is one of the Oldest, so most studied medications,
and for *most people might have the Least potential side effects compared to
some of the stuff us 'olde people'  are using.  If she had been e.g. a
Teenager, they might have tried Dilantin or something, but that's too strong
for someone so young (I think), and what you have they're trying to control
the problem but not interfere with e.g. growing bones, and body organs that
us 'olde people'  don't have to worry about, since we're all olde and mature
etc. with respect to body and organ development.
   Let us know how things progress.   We all care about this.

  The MRI you might be able to find on the efa site too, and they'd likely
let you be nearby while they do that one?   It's a 3D X-ray that shows any
potential problems (inside) down to 100ths of an inch in size.  Extremely
accurate, and it doesn't depend on whether someone was having a szr. during
the test or not.   That one is also relatively easier and quicker than an
EEG -- unless they think they need to 'sedate her',  there are *no needles
or anything gross.  She lies on a table, that's rolled into a large cylinder
about 4 feet in diameter, there's a crackling sound?  and it's done.   (I
don't know how they tell someone really young to lie still for a few
seconds, but that's all I had to do.  Mine was long ago -1993- I hope that
was the MRI test, since I had a bunch over about 4 weeks with mine.)
    I hope that one comes back clear too.      G./

Some information from one of my drug books that I use for work.
Synonyms:  phenobarbitone; phenylethylmalonylurea (boy, I hope those are
spelled correctly)
U.S./Canadian Brand Names:  Barbilixir (Canada); Barbita, Liminal, Solfoton
Thereapeutic Category:  Anticonvulsant; Barbiturate
Controlled Substance:  C-IV
Use:  Management of generalized tonic-clonic (grand mal) and partial
seizures, neonatal seizures, febrile seizures in children; sedation: etc.

It then goes on to give the doses for children for sedation and hypnotic
purposes, and for preoperative sedation.  Then in another section it
gives the doses for status epilepticus and for regular daily maintenance.

It says the medication comes in a variety of forms including capsules,
elixir (liquid), injection, powder for injection, tablet.

This is a link that gives the approved and off-label uses of that drug:

http://www.aesnet.org/Visitors/PatientsPractice/aed/aedtable.cfm?drug=Phenobarbital

There is a lot of information through the google search engine.  Don't
limit your search to phenobarbital but also look up barbiturate, which
gives even more important information.

Are they giving Jilli the phenobarbital to prepare/sedate her for the
MRI, or is it something they are going to give her for a long time?

Barb