You could check the Telephone book (or search for websites in UK?) to see
if there's a Local chapter of an Epilepsy Association nearby.   They might
have website or a library you could look through.   (Our Toronto Canada
Chapter, has had a Child Trained Councillor since about 1999, who
specializes in therapy and consultations etc. with Parents of Kids, plus she
runs a 'kids group' (targeted mostly at Teenagers newly diagnosed so far as
I know).
  *If your daughter's seizures (absences) were starting in one of her
Temporal Lobes (Dr. Geek stuff <- *I'm not a Dr.) , those could affect
Memory or new learning ability and if her speech etc. might be appearing to
be 'delayed' (if that's why they did the referral there) something like the
T.Lobe area *might affect that.   It would be of benefit to identify that,
as there might be extra help with learning workarounds or other skills that
might help with school so she doesn't accidentally get left behind because
it's not identified early.
  That's unfortunate above.   I *Hate "Experts" on what something is or
isn't.   So they don't use Medications on kids if she had Seizures
(absences).   That's the Best he could do?   We treat our Cars better than
that.

  If you look through Julie's Idaho site (address at end of her posts), or
the U.S. Ep. Foundation site.   Or try a Google or ?? search to look at 'the
Ketogenic Diet'.  That's a diet that works *best for kids (Dr. should have
known that if I 'trusted him'),  but only works for some types of seizures.
That should *ideally be monitored and planned with the Parents and the
Doctor.   And at that point the Dr. could do other tests to try identify why
it's Happening to begin with.   That would tell them if she's likely to
Outgrow this as she matures,  or if she might have to use some types of
pills after she's e.g. 16.
   Research and Developments in this area of Neurology are charging ahead
as more of us Baby Boomers age, so by the time she's 16, there will be *lots
of other therapies and medications tested and approved for use (by us olde
timers),  for her.
   **Alternatively when you find a *competent Neurologist, they can better
tell you whether the type she has is easily treatable and might *leave
altogether as she matures.

   I hope some of that helps.   Stay here, and keep us updated.   We have
people in about 12 timezones who read the group only 3-4x a week so there
will be other comments likely on your thread.     Good luck from Canada
(want some snow? )  G./

Oh how ridiculous!

It's getting worse ...

Yes, good for you! Stick at it.

Grrrrrrrrrrrrrrrr! I was told that about our son when the health visitor
noticed that he was aspirating his sibilants. We knew that he had gradually
learned to say all the other consonants so we ignored the advice and by the
time he went to school he could speak perfectly. And with a greater
vocabulary than the health visitor.

Good for him.

That's an excellent idea.

No but I think I wouldn't have been as patient as you've been.

Be persistent and let us know what happens.

Mary
Leeds UK

You're already here ...

Mary

 Mary was right -- you are already here.  Sometimes the weekend may get
quieter than during the week.   But an advantage of this group is it's
International, so if you have a question or something that's 'bugging you'
about how people with epilepsy (pwe)  are treated, or a comment for others
(since you have so much more experience With it, than some of us),  posts
that are put up stay active for 4-5 days, and as the various Timezones come
online, other comments or replies may be added.

   We have most of the 5 timezones in North America, people from the UK and
Europe, New Zealand and Australia, and sometimes Eastern Europe and South
America.
  It is a very handy way to get a 'free opinion'  or give one, about how a
particular medication might work for a seizure type, things to watch out
for,  labour laws or other concerns that people experience with themselves
or their kids, etc.
  If you still have some posts from Julie or Howdy Dave up on your reader,
at the end of their posts they usually list their Websites that you might
find of interest.   Julie's one is the Idaho Main Website, that has First
Aid Links, and living with Epilepsy issues.  Dave's  used to have
information about a Vagus Nerve Stimulator, links to other sites he's found
over the years, and information he's assembled over //many// years of work
on his site. Both their sites have links to the Ep. Foundation of America if
you haven't looked through it, which has a Medications Glossary and some
other information.
   (I sort most of my Group messages by Subject line Ascending, so they
tend to stay together on my reader.  So I wouldn't normally be on above
Subject Thread, unless I had information that would have helped them with
what an absence seizure might feel like to a child, and how they might
recognize them.  But your message was here, so I wanted to keep my reply, to
it, nearby.     Welcome to our world.    G./  )