Hi,<br>
It took me almost a week to feel up to writing this post. And I'm
finally done my sixth grade homework <img alt="Wink" src=
"i/expressions/face-icon-small-wink.gif" border="0">. Boy what a
year of school to get use to.<br>
<br>
Most of you have read the post about the full mutation panel
not pulling up anything; Doc thinks it is a still yet to be
identified gene or mutation. Doesn't change the diagnosis any. <img
alt="Frown" src="i/expressions/face-icon-small-frown.gif" border=
"0"><br>
<br>
We were there for about 2 to three hours.....were even in a
"sterile pod" as they call them. Did peak flows and they
were still good, not the best in the clinic but far from the worse.
We met with the CF doctor and nurse. We were given a 2 inch
notebook to keep all papers in....lab results, charts of sickness,
symptoms, new medications etc. He is now on 1000mg a day of
sulfamethoazole SS for the staph he cultured and for ABPA. Will
also be starting pulmozyne when ever they deliver the nebulizer;
only two nebs are approved to deliver pulmozyne. Machine should
have been delivered on Friday but they got the delivery
instructions confused so it will be tomorrow or Wednesday.
Switching from albuterol to Xopenex because it worked longer when
he took it before. They thought he had another polyp but we saw the
sinus specialist today and he said no, just a large turbenate (?).
.He also couldn't believe the CF diagnosis and almost sounded like
it was a mistake. I've learned not to put much hope in that
reaction, even from medical professionals (just a little out of his
expertise). Have to give a "poop" culture soon...we got
to bring home the goodies for that.<br>
<br>
Next appt. is for 6 weeks (5 weeks now and we will meet with the
respiratory specialist (beat the plugs out) dietary, and the social
worker. Maybe the social worker can convince my son's school to let
him bring bottled water (it was okay when the weather was warm). I
told his teacher he had to and she was going to tell all the
others...I'm sure it will end up needing a doctor's order. Water
fountains are yucky.<img alt="Disgusted" src=
"i/expressions/face-icon-small-disgusted.gif" border="0"><br>
<br>
Insurance charges $35 for a ninety day supply of pulmozyne but it
has to be by mail order. Same for Xopenex. Retail store is $35 for
30 days.<br>
<br>
So far things are well.....except I was physically exhausted from
our doctor's appt. and kept falling asleep in class.<br>
It took me almost a week to feel up to writing this post. And I'm
finally done my sixth grade homework <img alt="Wink" src=
"i/expressions/face-icon-small-wink.gif" border="0">. Boy what a
year of school to get use to.<br>
<br>
Most of you have read the post about the full mutation panel
not pulling up anything; Doc thinks it is a still yet to be
identified gene or mutation. Doesn't change the diagnosis any. <img
alt="Frown" src="i/expressions/face-icon-small-frown.gif" border=
"0"><br>
<br>
We were there for about 2 to three hours.....were even in a
"sterile pod" as they call them. Did peak flows and they
were still good, not the best in the clinic but far from the worse.
We met with the CF doctor and nurse. We were given a 2 inch
notebook to keep all papers in....lab results, charts of sickness,
symptoms, new medications etc. He is now on 1000mg a day of
sulfamethoazole SS for the staph he cultured and for ABPA. Will
also be starting pulmozyne when ever they deliver the nebulizer;
only two nebs are approved to deliver pulmozyne. Machine should
have been delivered on Friday but they got the delivery
instructions confused so it will be tomorrow or Wednesday.
Switching from albuterol to Xopenex because it worked longer when
he took it before. They thought he had another polyp but we saw the
sinus specialist today and he said no, just a large turbenate (?).
.He also couldn't believe the CF diagnosis and almost sounded like
it was a mistake. I've learned not to put much hope in that
reaction, even from medical professionals (just a little out of his
expertise). Have to give a "poop" culture soon...we got
to bring home the goodies for that.<br>
<br>
Next appt. is for 6 weeks (5 weeks now and we will meet with the
respiratory specialist (beat the plugs out) dietary, and the social
worker. Maybe the social worker can convince my son's school to let
him bring bottled water (it was okay when the weather was warm). I
told his teacher he had to and she was going to tell all the
others...I'm sure it will end up needing a doctor's order. Water
fountains are yucky.<img alt="Disgusted" src=
"i/expressions/face-icon-small-disgusted.gif" border="0"><br>
<br>
Insurance charges $35 for a ninety day supply of pulmozyne but it
has to be by mail order. Same for Xopenex. Retail store is $35 for
30 days.<br>
<br>
So far things are well.....except I was physically exhausted from
our doctor's appt. and kept falling asleep in class.<br>