|
Written by Lauren Snyder
|
|
Sunday, 06 November 2005 |
Hello [Preemie-l Members]; :-)
When my daughter was an infant we were giving regular dosages of Albuterol
via the nebulizer. During a terrible bout of a lung infection/cold I was
trying to hit the every 4-6 hour schedule because she was really struggling
to breathe during that time. At the same time, she showed for the first time
what was later coined by the neurologist as myoclonic behavior (dx benign
myoclonus - which I interpret as myoclonic behavior for no known reason). At
the first sign of this behavior I ceased all medications immediately. I was
pretty freaked out and we went through a cocktail of medical procedures to
try to figure out was going on. She jerked and twitched roughly 50x a day in
the first two to three days, after than it started to go down and basically
disappeared. Since there were no official discoveries via the neurologist -
I decided that Albuterol was a likely candidate for this type of behavior.
In future incidences when Brooke has been pretty sick and I have increased
her albuterol I will begin to see very subtle myoclonic movements, but
nothing as violent as when she was an infant. Anyway, I guess that I have
decided that Brooke either has a tendency towards myoclonic
behavior/movement that is brought on by Albuterol or is completely created
by albuterol as a reaction to the drug. So I would say that Brooke is likely
"especially sensitive" to the contents of Albuterol.
Needless to say, I was pretty excited when I was told that there was a drug
exactly like albuterol, without the side effects. My daughter was also on a
Medicaid/state program (I'm not sure which) at the time and was amply
supplied with Xopenex, so finances were not in issue at all. I also had an
extremely generous doctor who gave me a number of samples. I don't keep my
boxes of Xopenex around anymore so I can't be sure of the dosage, but 1.25mg
stands out in my mind - does that make sense? Standard vials, long and
skinny box. I followed recommended dosing by my pediatrician, and I
discussed this issue with my pediatric pulmonologist. I'm sure we would have
gone over dosage, although I don't remember the conversation.
My point is simply, that of all mothers, I am extremely motivated for
Xopenex to be as effective as Albuterol. It just simply wasn't so for us. We
substituted for months (half a year or more maybe, I don't remember exactly)
and during that time we found ourselves in the emergency room on a number of
occasions ...where they would give us a choice of dec (something or other
the relative to dex - the steroid) or a big hit of albuterol. As time
passed, and my daughter grew older and had had a few reluctant hits of
Albuterol, I decided to switch back to albuterol as it was more effective -
and I was using it sparingly in the most desperate of times only. Now, my
daughter is 2 1/2 years old and we have an inhaler of albuterol with a
spacer that we use as needed.
So that was our experience. I would love to know of a drug that is truly as
effective, and without the harsh effects. Xopenex did not deliver for us -
we can't be the only family. Please don't think I am "against" Xopenex. It
was true that we didn't have the negative experiences that we had with
albuterol, but at the same time it wasn't doing the job I expected it to do
after having used albuterol. I am waiting for a third alternative for
families...Or Xopenex Plus! Or something! (smile)
As far as being 5x as expensive as albuterol which I am just now discovering
from this thread...that is another discussion...and terribly upsetting and
robbery to those dependent on the drug. I would have been infuriated on top
of being disappointed for having paid 5x as much for something which
appeared ineffective.
Sincerely,
Lauren - Mom to Brooke (born 26.5wks now 2.5yrs) and Brandon (born 38wks now
6 months)
|
