Laura Johnson

If you can find a pharmacy that is a compounding pharmacy, they can make flavors for you. My ds hated to take liquids, so the dr. suggested that I go there and they could make it into a candy like a gummy. It still tasted awful, so he just did the liquids. Actually, it turned out he didn't need it after all, so we could stop the meds. But, the pharmacy was so nice about trying different flavors. They made gummy stars flavored with different types for him to try. They all stood there watching him taste it. They really worked on trying to get it to taste good. It turned out to still taste so much like the medicine. but, they can mix up any flavor for you. I think the term is compounding pharmacy. Some private ones do that, but not Walgreens or Eckerds. There should be one somewhere near you.
Laura J

[Non-text portions of this message have been removed]

SHYRLEY WILLIAMS

The anti-epileptic that Celyn takes (Sabril) comes in
sachets of powder. You add 10 ml of water to each
sachet and draw up the dosage (3.5 ml in Celyn's case
twice a day).
I spoke to the doc today about using apple jiuce or
somesuch but there is a fear that if she tastes drugs
in food she may refuse all food. So far she isn't
eating any solids as she has oral aversion (because of
the drugs) and she has dropped 2 pounds in weight and
is still shrinking.
Its a real pain as should her seizures return she will
need other drugs added into her regime. She has
started to gag when she *sees* the syringe full of
meds and she now has a hyper-gag reflex that means she
vomits her milk at least once a day :-(
I also feel bad as this was the baby that was going to
be raised in a non-coercive manner from the beginning,
never see a doctor, never go to school etc etc
All my plans and dreams got a bit shattered plus it
affects the other 3, being dragged to hospital
appointments, having therapists and social workers in
our house and missing me every time Celyn is in
hospital - she was ina total of 9 weeks over the
summer.
Well, that turned into a bit of a moan but having a
severely brain damaged baby is making me a bit moany
and upset over how things have changed.

Shyrley


--- Laura Johnson <lauraj2@...> wrote:

---------------------------------
If you can find a pharmacy that is a compounding
pharmacy, they can make flavors for you. My ds hated
to take liquids, so the dr. suggested that I go there
and they could make it into a candy like a gummy. It
still tasted awful, so he just did the liquids.
Actually, it turned out he didn't need it after all,
so we could stop the meds. But, the pharmacy was so
nice about trying different flavors. They made gummy
stars flavored with different types for him to try.
They all stood there watching him taste it. They
really worked on trying to get it to taste good. It
turned out to still taste so much like the medicine.
but, they can mix up any flavor for you. I think the
term is compounding pharmacy. Some private ones do
that, but not Walgreens or Eckerds. There should be
one somewhere near you.
Laura J

[Non-text portions of this message have been removed]



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In a message dated 10/20/2004 12:15:04 PM Central Standard Time,
shyrley.williams@... writes:

Well, that turned into a bit of a moan but having a
severely brain damaged baby is making me a bit moany
and upset over how things have changed.




~~~

I'm heartbroken for you, Shyrley. I wish you peace in your decisions.

Karen


[Non-text portions of this message have been removed]

Robyn Coburn

<<<< The anti-epileptic that Celyn takes (Sabril) comes in
sachets of powder. You add 10 ml of water to each
sachet and draw up the dosage (3.5 ml in Celyn's case
twice a day).
I spoke to the doc today about using apple jiuce or
somesuch but there is a fear that if she tastes drugs
in food she may refuse all food. So far she isn't
eating any solids as she has oral aversion (because of
the drugs) and she has dropped 2 pounds in weight and
is still shrinking.
Its a real pain as should her seizures return she will
need other drugs added into her regime. She has
started to gag when she *sees* the syringe full of
meds and she now has a hyper-gag reflex that means she
vomits her milk at least once a day :-(
I also feel bad as this was the baby that was going to
be raised in a non-coercive manner from the beginning,
never see a doctor, never go to school etc etc
All my plans and dreams got a bit shattered plus it
affects the other 3, being dragged to hospital
appointments, having therapists and social workers in
our house and missing me every time Celyn is in
hospital - she was ina total of 9 weeks over the
summer.>>>>

Dear Shyrley, I'm so sorry that you and your family are going through this
pain. I hope you and the doctors can find a way to help Celyn get those
essential meds and her food.

Robyn L. Coburn

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Fetteroll

on 10/20/04 1:12 PM, SHYRLEY WILLIAMS at shyrley.williams@...
wrote:

> I spoke to the doc today about using apple jiuce or
> somesuch but there is a fear that if she tastes drugs
> in food she may refuse all food. So far she isn't
> eating any solids as she has oral aversion (because of
> the drugs) and she has dropped 2 pounds in weight and
> is still shrinking.

Are you by any chance feeling her aversion when you give her her medicine?
Is she perhaps picking up your tension and guilt at having to force this on
her? So the more averse you feel, the more averse she feels, so you feel
even worse, creating an upward spiral. Maybe there are some holistic
practices or something that could help you break that cycle so you can
project calmness to her.

Joyce