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Diet and supplements
- Thread starter AleksandraKaczynska
- Start date
AleksandraKaczynska
New member
What is PS? and how does he cope with his mutation?
AleksandraKaczynska
New member
What is PS? and how does he cope with his mutation?
AleksandraKaczynska
New member
What is PS? and how does he cope with his mutation?
PS is pancreatic sufficient = doesn't need digestive enzymes.
DS is in gymnastics, skating lessons, swimming & tennis in the summer. We're just trying to find some sort of sporting activity that he likes and will continue later on in life. After gymnastics and swimming I make sure he uses hand sanitizing wipes because he always has a snack in the car on the way home.
We didn't get the vest until he was 3 1/2. So we did CPT three times a day -- before work/daycare, after work before supper and before bed. If he got sick, my husband would get up at 2 in the morning and do an extra CPT treatment. It's amazing how something so simple can keep their lungs clear.
DS is in gymnastics, skating lessons, swimming & tennis in the summer. We're just trying to find some sort of sporting activity that he likes and will continue later on in life. After gymnastics and swimming I make sure he uses hand sanitizing wipes because he always has a snack in the car on the way home.
We didn't get the vest until he was 3 1/2. So we did CPT three times a day -- before work/daycare, after work before supper and before bed. If he got sick, my husband would get up at 2 in the morning and do an extra CPT treatment. It's amazing how something so simple can keep their lungs clear.
PS is pancreatic sufficient = doesn't need digestive enzymes.
DS is in gymnastics, skating lessons, swimming & tennis in the summer. We're just trying to find some sort of sporting activity that he likes and will continue later on in life. After gymnastics and swimming I make sure he uses hand sanitizing wipes because he always has a snack in the car on the way home.
We didn't get the vest until he was 3 1/2. So we did CPT three times a day -- before work/daycare, after work before supper and before bed. If he got sick, my husband would get up at 2 in the morning and do an extra CPT treatment. It's amazing how something so simple can keep their lungs clear.
DS is in gymnastics, skating lessons, swimming & tennis in the summer. We're just trying to find some sort of sporting activity that he likes and will continue later on in life. After gymnastics and swimming I make sure he uses hand sanitizing wipes because he always has a snack in the car on the way home.
We didn't get the vest until he was 3 1/2. So we did CPT three times a day -- before work/daycare, after work before supper and before bed. If he got sick, my husband would get up at 2 in the morning and do an extra CPT treatment. It's amazing how something so simple can keep their lungs clear.
PS is pancreatic sufficient = doesn't need digestive enzymes.
<br />
<br />DS is in gymnastics, skating lessons, swimming & tennis in the summer. We're just trying to find some sort of sporting activity that he likes and will continue later on in life. After gymnastics and swimming I make sure he uses hand sanitizing wipes because he always has a snack in the car on the way home.
<br />
<br />We didn't get the vest until he was 3 1/2. So we did CPT three times a day -- before work/daycare, after work before supper and before bed. If he got sick, my husband would get up at 2 in the morning and do an extra CPT treatment. It's amazing how something so simple can keep their lungs clear.
<br />
<br />DS is in gymnastics, skating lessons, swimming & tennis in the summer. We're just trying to find some sort of sporting activity that he likes and will continue later on in life. After gymnastics and swimming I make sure he uses hand sanitizing wipes because he always has a snack in the car on the way home.
<br />
<br />We didn't get the vest until he was 3 1/2. So we did CPT three times a day -- before work/daycare, after work before supper and before bed. If he got sick, my husband would get up at 2 in the morning and do an extra CPT treatment. It's amazing how something so simple can keep their lungs clear.
Emily also takes dance lessons 10mo out of the year and has reached an age/skill level where the lessons are very active- which is wonderful for her. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I like it for her since it's a way to get some good exercise in a temperature-controlled environment (she doesn't tolerate the heat well.)
Emily also takes dance lessons 10mo out of the year and has reached an age/skill level where the lessons are very active- which is wonderful for her. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I like it for her since it's a way to get some good exercise in a temperature-controlled environment (she doesn't tolerate the heat well.)
Emily also takes dance lessons 10mo out of the year and has reached an age/skill level where the lessons are very active- which is wonderful for her. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I like it for her since it's a way to get some good exercise in a temperature-controlled environment (she doesn't tolerate the heat well.)
AleksandraKaczynska
New member
Dance.....little balerina <img src="i/expressions/face-icon-small-happy.gif" border="0">.... something that Joanna wishes for the most - but she has to wait a year or so <img src="i/expressions/face-icon-small-happy.gif" border="0">
I'm glad to hear others think doing sports is important.
thank you again.
Do any of you have mobile inhalators and what kind?
I'm glad to hear others think doing sports is important.
thank you again.
Do any of you have mobile inhalators and what kind?
AleksandraKaczynska
New member
Dance.....little balerina <img src="i/expressions/face-icon-small-happy.gif" border="0">.... something that Joanna wishes for the most - but she has to wait a year or so <img src="i/expressions/face-icon-small-happy.gif" border="0">
<br />I'm glad to hear others think doing sports is important.
<br />thank you again.
<br />Do any of you have mobile inhalators and what kind?
<br />I'm glad to hear others think doing sports is important.
<br />thank you again.
<br />Do any of you have mobile inhalators and what kind?
We have two different nebulizers, neither are "portable" in terms of being battery operated; however, we do travel with our Pari Proneb Ultra II, which is quite compact and have used it in the car with a power inverter, though our new VW Jetta has an actual plug-in in the back seat.
The Devilbiss is a little bulkier and I wouldn't want to travel with it.
Battery operated nebulizers/Compressors like the Pari Trek are not recommended for certain medications such as Tobi or Pulmozyme. But the newer machines for Cayston I believe can be used provided the medications are compounded a certain way.
You could check out amy --- Noexuses blog for information on travelling as she's travelled extensively thru Europe, Japan using different compressors and vesting.
The Devilbiss is a little bulkier and I wouldn't want to travel with it.
Battery operated nebulizers/Compressors like the Pari Trek are not recommended for certain medications such as Tobi or Pulmozyme. But the newer machines for Cayston I believe can be used provided the medications are compounded a certain way.
You could check out amy --- Noexuses blog for information on travelling as she's travelled extensively thru Europe, Japan using different compressors and vesting.
We have two different nebulizers, neither are "portable" in terms of being battery operated; however, we do travel with our Pari Proneb Ultra II, which is quite compact and have used it in the car with a power inverter, though our new VW Jetta has an actual plug-in in the back seat.
The Devilbiss is a little bulkier and I wouldn't want to travel with it.
Battery operated nebulizers/Compressors like the Pari Trek are not recommended for certain medications such as Tobi or Pulmozyme. But the newer machines for Cayston I believe can be used provided the medications are compounded a certain way.
You could check out amy --- Noexuses blog for information on travelling as she's travelled extensively thru Europe, Japan using different compressors and vesting.
The Devilbiss is a little bulkier and I wouldn't want to travel with it.
Battery operated nebulizers/Compressors like the Pari Trek are not recommended for certain medications such as Tobi or Pulmozyme. But the newer machines for Cayston I believe can be used provided the medications are compounded a certain way.
You could check out amy --- Noexuses blog for information on travelling as she's travelled extensively thru Europe, Japan using different compressors and vesting.
We have two different nebulizers, neither are "portable" in terms of being battery operated; however, we do travel with our Pari Proneb Ultra II, which is quite compact and have used it in the car with a power inverter, though our new VW Jetta has an actual plug-in in the back seat.
<br />
<br />The Devilbiss is a little bulkier and I wouldn't want to travel with it.
<br />
<br />Battery operated nebulizers/Compressors like the Pari Trek are not recommended for certain medications such as Tobi or Pulmozyme. But the newer machines for Cayston I believe can be used provided the medications are compounded a certain way.
<br />
<br />You could check out amy --- Noexuses blog for information on travelling as she's travelled extensively thru Europe, Japan using different compressors and vesting.
<br />
<br />The Devilbiss is a little bulkier and I wouldn't want to travel with it.
<br />
<br />Battery operated nebulizers/Compressors like the Pari Trek are not recommended for certain medications such as Tobi or Pulmozyme. But the newer machines for Cayston I believe can be used provided the medications are compounded a certain way.
<br />
<br />You could check out amy --- Noexuses blog for information on travelling as she's travelled extensively thru Europe, Japan using different compressors and vesting.
<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Travel">Amy's blog</a>
Emily started dance (ballet & tap to begin with, now she also does jazz) when she was in kindergarten... this is now her 5th year and she'll get a trophy at her recital this spring! <img src="i/expressions/face-icon-small-smile.gif" border="0"> She's so excited about this. It's great exercise- builds strength and endurance.
Emily started dance (ballet & tap to begin with, now she also does jazz) when she was in kindergarten... this is now her 5th year and she'll get a trophy at her recital this spring! <img src="i/expressions/face-icon-small-smile.gif" border="0"> She's so excited about this. It's great exercise- builds strength and endurance.
<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Travel">Amy's blog</a>
Emily started dance (ballet & tap to begin with, now she also does jazz) when she was in kindergarten... this is now her 5th year and she'll get a trophy at her recital this spring! <img src="i/expressions/face-icon-small-smile.gif" border="0"> She's so excited about this. It's great exercise- builds strength and endurance.
Emily started dance (ballet & tap to begin with, now she also does jazz) when she was in kindergarten... this is now her 5th year and she'll get a trophy at her recital this spring! <img src="i/expressions/face-icon-small-smile.gif" border="0"> She's so excited about this. It's great exercise- builds strength and endurance.
<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Travel">Amy's blog</a>
<br />
<br />Emily started dance (ballet & tap to begin with, now she also does jazz) when she was in kindergarten... this is now her 5th year and she'll get a trophy at her recital this spring! <img src="i/expressions/face-icon-small-smile.gif" border="0"> She's so excited about this. It's great exercise- builds strength and endurance.
<br />
<br />Emily started dance (ballet & tap to begin with, now she also does jazz) when she was in kindergarten... this is now her 5th year and she'll get a trophy at her recital this spring! <img src="i/expressions/face-icon-small-smile.gif" border="0"> She's so excited about this. It's great exercise- builds strength and endurance.
AleksandraKaczynska
New member
Congratulations to Emily!!!
AleksandraKaczynska
New member
Congratulations to Emily!!!