My daughter is 9 and was diagnosed with BRE a couple of months ago.
She has been on Tegretol for a month now and until a few days ago the
'sensations' in and around her face had stopped completely. In the
last few days, they've started up again, and she complains of her
throat feeling 'dry' (but not really cuz even when she drinks it still
feels that way) and her stomach hurting. And also, the sensations in
her face seem to have returned. Has anyone else with kids with BRE
heard symptoms described this way? I'm trying to figure out if this is
something new, BRE getting worse, or something else.
thx
> My daughter is 9 and was diagnosed with BRE a couple of months ago.
> She has been on Tegretol for a month now and until a few days ago the
[quoted text clipped - 6 lines]
> something new, BRE getting worse, or something else.
> thx
Hi. I don't know what 'BRE' is. I use Tegretol Controlled Release
(CR) to control Complex Partial Seizures. It should be taken with
Milk, Juice or Food, but *not with Grapefruit or its juices (one of
its acids interferes with Tegretol). If it's a tablet it should also
be swallowed whole unless the Dr. has prescribed another type or tells
you otherwise.
Any cold medicines etc. should be shown to the Pharmacy who fills
the Tegretol prescription to make sure there are no conflicts (some
contain alcohol or other things that interfere with Tegretol).
(I was assuming above she is using a tablet form of Tegretol? If
it's a child's type of Tegretol, ie liquid, etc., you should speak to
the Pharmacy or Dr. who filled the prescription.)
Also no doses of Tegretol should be *skipped or missed, as most
types depend on a stable level in the blood, and consistent rate of
use. For the same reason, if the Dr. is taking blood samples to check
levels, they will be assuming that the dose is being taken
consistently when they read the med. results of the blood tests. If
some doses are missed (for whatever reason) that can interfere with
accurate interpretation of the bloodwork, and they might inadvertently
increase the dose, assuming it's not being absorbed at the target
levels they are seeking.
You could also ask the Pharmacy if the dry mouth is a symptom of
anything you should speak to the Dr. about, and if there are other
side effects you should be aware of. There's a medications glossary
under the U.S. Ep. Foundation site http://efa.org -- I think you
click on medications then scroll or type in tegretol and 'find' ? and
it will give a one page printout if your pharmacy didn't already. I
think there's a button near the end with a 'printable format' if it's
not formatted for printing already there.
I think we had someone else who had a child using tegretol, but
that was more than a year ago and they might not still be reading the
board. You could look in a few times over next few days in case
they're still around.
(We have several adults who use that, but our metabolisms operate
differently by our body Mass than a child. That's why I'd be more
comfortable if you spoke to the Pharmacy or Dr. too if this condition
persists. It's important though to not promptly stop taking that
pill without the Dr. telling you how to do it as the dose is usually
reduced slowly over days or weeks if another pill was going to be
tried instead.)
Let us know too if you find anything that works elsewhere, as lots
of people read the history of this board for useful information too.
G./