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amessofphotos
New member
I would include a bathroom clause even if you think she doesn't need it. Sometimes enzymes are forgotten or stop working or sudden illness could arise from something else but it would be better to have a plan in case to prevent embarrassment just in case.
I would also include some academic accommodations such as making sure she is given appropriate make-up work during absences. I found that as I went through school a few teachers were surprisingly unaccommodating when it came to not giving me "busy work" letting me make up tests and letting me get up and blow my nose/go to the bathroom during tests.
just a few thoughts!
I would also include some academic accommodations such as making sure she is given appropriate make-up work during absences. I found that as I went through school a few teachers were surprisingly unaccommodating when it came to not giving me "busy work" letting me make up tests and letting me get up and blow my nose/go to the bathroom during tests.
just a few thoughts!
amessofphotos
New member
I would include a bathroom clause even if you think she doesn't need it. Sometimes enzymes are forgotten or stop working or sudden illness could arise from something else but it would be better to have a plan in case to prevent embarrassment just in case.
I would also include some academic accommodations such as making sure she is given appropriate make-up work during absences. I found that as I went through school a few teachers were surprisingly unaccommodating when it came to not giving me "busy work" letting me make up tests and letting me get up and blow my nose/go to the bathroom during tests.
just a few thoughts!
I would also include some academic accommodations such as making sure she is given appropriate make-up work during absences. I found that as I went through school a few teachers were surprisingly unaccommodating when it came to not giving me "busy work" letting me make up tests and letting me get up and blow my nose/go to the bathroom during tests.
just a few thoughts!
amessofphotos
New member
I would include a bathroom clause even if you think she doesn't need it. Sometimes enzymes are forgotten or stop working or sudden illness could arise from something else but it would be better to have a plan in case to prevent embarrassment just in case.
<br />I would also include some academic accommodations such as making sure she is given appropriate make-up work during absences. I found that as I went through school a few teachers were surprisingly unaccommodating when it came to not giving me "busy work" letting me make up tests and letting me get up and blow my nose/go to the bathroom during tests.
<br />
<br />just a few thoughts!
<br />I would also include some academic accommodations such as making sure she is given appropriate make-up work during absences. I found that as I went through school a few teachers were surprisingly unaccommodating when it came to not giving me "busy work" letting me make up tests and letting me get up and blow my nose/go to the bathroom during tests.
<br />
<br />just a few thoughts!
We used Lisa Greene's Letter to teachers and included the CFRI booklet about school as well as CFF brochures. Other things to consider would be field trips -- when DS went on any they sent along enzymes. Knowing when parties or events are planned so they don't miss any fun events due to doctor's appointments.
<a href="<A HREF="http://www.happyheartfamilies.com/SchoolIssues.html">http://www.happyheartfamilies.com/SchoolIssues.html</A>"><A HREF="http://www.happyheartfamilies.com/SchoolIssues.html">http://www.happyheartfamilies.com/SchoolIssues.html</A></a><br>
<br>Keeping any other CF kids out of the same classroom. Reminder to enforce the sick policy -- that something as simple as a cold can lead to something worse for our kids. H1N1 was an issue when DS was in kindergarten and his teacher put a reminder in the class newsletter without mentioning DS as parents were giving their sick kids fever reducers and sending sick kids to school and around 1 they'd suddenly be sick again.
<br>
<br>Being that they spend a lot of time with our kids, to let us know if there are increased trips to the bathroom or an increased cought. DS' speech teacher noticed that during tobi months that his nosed is stuffed up and that he becomes a mouth breather.
<br>
<br>Our school has a list of "appropriate" healthy snacks for snack time --- we send peanuts with DS, but the school indicated that low fat, low salt items wouldn't apply to him.
<br>
<br>That our children are normal kids, who require a few extra things to keep them healthy. The word "can't" isn't used in our house. We don't want DS trying to use CF to get out of things.
<a href="<A HREF="http://www.happyheartfamilies.com/SchoolIssues.html">http://www.happyheartfamilies.com/SchoolIssues.html</A>"><A HREF="http://www.happyheartfamilies.com/SchoolIssues.html">http://www.happyheartfamilies.com/SchoolIssues.html</A></a><br>
<br>Keeping any other CF kids out of the same classroom. Reminder to enforce the sick policy -- that something as simple as a cold can lead to something worse for our kids. H1N1 was an issue when DS was in kindergarten and his teacher put a reminder in the class newsletter without mentioning DS as parents were giving their sick kids fever reducers and sending sick kids to school and around 1 they'd suddenly be sick again.
<br>
<br>Being that they spend a lot of time with our kids, to let us know if there are increased trips to the bathroom or an increased cought. DS' speech teacher noticed that during tobi months that his nosed is stuffed up and that he becomes a mouth breather.
<br>
<br>Our school has a list of "appropriate" healthy snacks for snack time --- we send peanuts with DS, but the school indicated that low fat, low salt items wouldn't apply to him.
<br>
<br>That our children are normal kids, who require a few extra things to keep them healthy. The word "can't" isn't used in our house. We don't want DS trying to use CF to get out of things.
We used Lisa Greene's Letter to teachers and included the CFRI booklet about school as well as CFF brochures. Other things to consider would be field trips -- when DS went on any they sent along enzymes. Knowing when parties or events are planned so they don't miss any fun events due to doctor's appointments.
<a href="<A HREF="http://www.happyheartfamilies.com/SchoolIssues.html">http://www.happyheartfamilies.com/SchoolIssues.html</A>"><A HREF="http://www.happyheartfamilies.com/SchoolIssues.html">http://www.happyheartfamilies.com/SchoolIssues.html</A></a><br>
<br>Keeping any other CF kids out of the same classroom. Reminder to enforce the sick policy -- that something as simple as a cold can lead to something worse for our kids. H1N1 was an issue when DS was in kindergarten and his teacher put a reminder in the class newsletter without mentioning DS as parents were giving their sick kids fever reducers and sending sick kids to school and around 1 they'd suddenly be sick again.
<br>
<br>Being that they spend a lot of time with our kids, to let us know if there are increased trips to the bathroom or an increased cought. DS' speech teacher noticed that during tobi months that his nosed is stuffed up and that he becomes a mouth breather.
<br>
<br>Our school has a list of "appropriate" healthy snacks for snack time --- we send peanuts with DS, but the school indicated that low fat, low salt items wouldn't apply to him.
<br>
<br>That our children are normal kids, who require a few extra things to keep them healthy. The word "can't" isn't used in our house. We don't want DS trying to use CF to get out of things.
<a href="<A HREF="http://www.happyheartfamilies.com/SchoolIssues.html">http://www.happyheartfamilies.com/SchoolIssues.html</A>"><A HREF="http://www.happyheartfamilies.com/SchoolIssues.html">http://www.happyheartfamilies.com/SchoolIssues.html</A></a><br>
<br>Keeping any other CF kids out of the same classroom. Reminder to enforce the sick policy -- that something as simple as a cold can lead to something worse for our kids. H1N1 was an issue when DS was in kindergarten and his teacher put a reminder in the class newsletter without mentioning DS as parents were giving their sick kids fever reducers and sending sick kids to school and around 1 they'd suddenly be sick again.
<br>
<br>Being that they spend a lot of time with our kids, to let us know if there are increased trips to the bathroom or an increased cought. DS' speech teacher noticed that during tobi months that his nosed is stuffed up and that he becomes a mouth breather.
<br>
<br>Our school has a list of "appropriate" healthy snacks for snack time --- we send peanuts with DS, but the school indicated that low fat, low salt items wouldn't apply to him.
<br>
<br>That our children are normal kids, who require a few extra things to keep them healthy. The word "can't" isn't used in our house. We don't want DS trying to use CF to get out of things.
<p>We used Lisa Greene's Letter to teachers and included the CFRI booklet about school as well as CFF brochures. Other things to consider would be field trips -- when DS went on any they sent along enzymes. Knowing when parties or events are planned so they don't miss any fun events due to doctor's appointments.
<p><p><a href="<A HREF="http://www.happyheartfamilies.com/SchoolIssues.html">http://www.happyheartfamilies.com/SchoolIssues.html</A>"><A HREF="http://www.happyheartfamilies.com/SchoolIssues.html">http://www.happyheartfamilies.com/SchoolIssues.html</A></a><br>
<br>Keeping any other CF kids out of the same classroom. Reminder to enforce the sick policy -- that something as simple as a cold can lead to something worse for our kids. H1N1 was an issue when DS was in kindergarten and his teacher put a reminder in the class newsletter without mentioning DS as parents were giving their sick kids fever reducers and sending sick kids to school and around 1 they'd suddenly be sick again.
<br>
<br>Being that they spend a lot of time with our kids, to let us know if there are increased trips to the bathroom or an increased cought. DS' speech teacher noticed that during tobi months that his nosed is stuffed up and that he becomes a mouth breather.
<br>
<br>Our school has a list of "appropriate" healthy snacks for snack time --- we send peanuts with DS, but the school indicated that low fat, low salt items wouldn't apply to him.
<br>
<br>That our children are normal kids, who require a few extra things to keep them healthy. The word "can't" isn't used in our house. We don't want DS trying to use CF to get out of things.
<p><p><a href="<A HREF="http://www.happyheartfamilies.com/SchoolIssues.html">http://www.happyheartfamilies.com/SchoolIssues.html</A>"><A HREF="http://www.happyheartfamilies.com/SchoolIssues.html">http://www.happyheartfamilies.com/SchoolIssues.html</A></a><br>
<br>Keeping any other CF kids out of the same classroom. Reminder to enforce the sick policy -- that something as simple as a cold can lead to something worse for our kids. H1N1 was an issue when DS was in kindergarten and his teacher put a reminder in the class newsletter without mentioning DS as parents were giving their sick kids fever reducers and sending sick kids to school and around 1 they'd suddenly be sick again.
<br>
<br>Being that they spend a lot of time with our kids, to let us know if there are increased trips to the bathroom or an increased cought. DS' speech teacher noticed that during tobi months that his nosed is stuffed up and that he becomes a mouth breather.
<br>
<br>Our school has a list of "appropriate" healthy snacks for snack time --- we send peanuts with DS, but the school indicated that low fat, low salt items wouldn't apply to him.
<br>
<br>That our children are normal kids, who require a few extra things to keep them healthy. The word "can't" isn't used in our house. We don't want DS trying to use CF to get out of things.
M
Mommafirst
Guest
CF4Life -- the short answer is "its complicated". The long answer is that she is "just barely" pancreatic sufficient. Over 500 is considered "normal" but under 200 is considered Pancreatic Insufficient, and most people with sever PI are well under 100. Alyssa's numbers were at 250. So not normal, but not PI. She really struggles gaining weight and has a feeding tube, so she gets enzymes to help her get the most of the calories she eats. We watch her bathroom habits closely and she doesn't have any issues -- so the docs feel its better to be on them than not.
M
Mommafirst
Guest
CF4Life -- the short answer is "its complicated". The long answer is that she is "just barely" pancreatic sufficient. Over 500 is considered "normal" but under 200 is considered Pancreatic Insufficient, and most people with sever PI are well under 100. Alyssa's numbers were at 250. So not normal, but not PI. She really struggles gaining weight and has a feeding tube, so she gets enzymes to help her get the most of the calories she eats. We watch her bathroom habits closely and she doesn't have any issues -- so the docs feel its better to be on them than not.
M
Mommafirst
Guest
CF4Life -- the short answer is "its complicated". The long answer is that she is "just barely" pancreatic sufficient. Over 500 is considered "normal" but under 200 is considered Pancreatic Insufficient, and most people with sever PI are well under 100. Alyssa's numbers were at 250. So not normal, but not PI. She really struggles gaining weight and has a feeding tube, so she gets enzymes to help her get the most of the calories she eats. We watch her bathroom habits closely and she doesn't have any issues -- so the docs feel its better to be on them than not.
cinderellasmom
New member
<P>I feel your pain on this. lol My daughter and I are getting ready to begin work on a 504 plan for her to have in place. In kindergarten, I came to the meeting, and was assured that anything we needed done, would be, and that maybe if her illness progressed, we should come back to this, if it's needed. (My concerns back then were frequent bathroom, snacks between meals, enzymes, and a couple years ago, nebulizer treatment before lunch at school as well. But, she has had stays all of sudden during the school year many times, since kindergarten, including one of her longest stays (15 days) in Jan. when she cultured staff. (She didn't show any symptoms whatsoever of the lung part of CF until age 5, the summer before she started kindergarten. Before this she only had the treatments and symptoms of the digestive part, since 2 mos. old. She just came home last night from an 18 day stay in the hospital. She cultured pseudomonas cepacia this time, and had to be on heavy duty treatments to help, but was required to stay the 14 days additional after the culture results came back. (We had already been there a few days when the results came back from the throat culture.) I've always been able to help her out with missed assignments, homework, etc, and she always bounces back,(she had A/B honor roll all year last year, in spite of a hospitalization the first week of school, and the beginning of second semester this past school year), but seeing that she will now have to go in the hospital more frequently for treatments from now on, I think it would be a good idea to have a plan in place. </P>
<P>In the older grades, they normally aren't granted to have snacks between meals, so I mentioned this to the doctor, and he said that I need to mention this during the meeting, because she HAS to have 3,300-3,500 calories a day right now, to gain weight. (A dietician calculated her intake each day, and averaged what she ate daily, during her stay for me, so I could have some idea of how many calories she needs. So, now, snacks are not an option, they're a necessity. <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's hard to believe she'll be in 5th grade this year! sniff, sniff. <img src="i/expressions/face-icon-small-smile.gif" border="0"></P>
<P> </P>
<P>In the older grades, they normally aren't granted to have snacks between meals, so I mentioned this to the doctor, and he said that I need to mention this during the meeting, because she HAS to have 3,300-3,500 calories a day right now, to gain weight. (A dietician calculated her intake each day, and averaged what she ate daily, during her stay for me, so I could have some idea of how many calories she needs. So, now, snacks are not an option, they're a necessity. <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's hard to believe she'll be in 5th grade this year! sniff, sniff. <img src="i/expressions/face-icon-small-smile.gif" border="0"></P>
<P> </P>
cinderellasmom
New member
<P>I feel your pain on this. lol My daughter and I are getting ready to begin work on a 504 plan for her to have in place. In kindergarten, I came to the meeting, and was assured that anything we needed done, would be, and that maybe if her illness progressed, we should come back to this, if it's needed. (My concerns back then were frequent bathroom, snacks between meals, enzymes, and a couple years ago, nebulizer treatment before lunch at school as well. But, she has had stays all of sudden during the school year many times, since kindergarten, including one of her longest stays (15 days) in Jan. when she cultured staff. (She didn't show any symptoms whatsoever of the lung part of CF until age 5,the summer before she started kindergarten. Before this she only had the treatments and symptoms of the digestive part, since 2 mos. old. She just came home last night from an 18 day stay in the hospital. She cultured pseudomonas cepacia this time, and had to be on heavy duty treatments to help, but was required to stay the 14 days additional after the culture results came back. (We had already been there a few days when the results came back from the throat culture.) I've always been able to help her out with missed assignments, homework, etc, and she always bounces back,(she hadA/Bhonor roll all year last year, in spite of a hospitalization the first week of school, and the beginning of second semester this past school year),but seeing that she will now have to go in the hospital more frequently for treatments from now on, I think it would be a good idea to have a plan in place. </P>
<P>In the older grades, they normally aren't granted to have snacks between meals, so I mentioned this to the doctor, and he said that I need to mention this during the meeting, because she HAS to have 3,300-3,500 calories a day right now, to gain weight. (A dietician calculated her intake each day, and averaged what she ate daily, during her stay for me, so I could have some idea of how many calories she needs. So, now, snacks are not an option, they're a necessity. <img src="i/expressions/face-icon-small-smile.gif" border="0">It's hard to believe she'll be in 5th grade this year! sniff, sniff. <img src="i/expressions/face-icon-small-smile.gif" border="0"></P>
<P></P>
<P>In the older grades, they normally aren't granted to have snacks between meals, so I mentioned this to the doctor, and he said that I need to mention this during the meeting, because she HAS to have 3,300-3,500 calories a day right now, to gain weight. (A dietician calculated her intake each day, and averaged what she ate daily, during her stay for me, so I could have some idea of how many calories she needs. So, now, snacks are not an option, they're a necessity. <img src="i/expressions/face-icon-small-smile.gif" border="0">It's hard to believe she'll be in 5th grade this year! sniff, sniff. <img src="i/expressions/face-icon-small-smile.gif" border="0"></P>
<P></P>
cinderellasmom
New member
<P>I feel your pain on this. lol My daughter and I are getting ready to begin work on a 504 plan for her to have in place. In kindergarten, I came to the meeting, and was assured that anything we needed done, would be, and that maybe if her illness progressed, we should come back to this, if it's needed. (My concerns back then were frequent bathroom, snacks between meals, enzymes, and a couple years ago, nebulizer treatment before lunch at school as well. But, she has had stays all of sudden during the school year many times, since kindergarten, including one of her longest stays (15 days) in Jan. when she cultured staff. (She didn't show any symptoms whatsoever of the lung part of CF until age 5,the summer before she started kindergarten. Before this she only had the treatments and symptoms of the digestive part, since 2 mos. old. <BR>She just came home last night from an 18 day stay in the hospital. She cultured pseudomonas cepacia this time, and had to be on heavy duty treatments to help, but was required to stay the 14 days additional after the culture results came back. (We had already been there a few days when the results came back from the throat culture.) I've always been able to help her out with missed assignments, homework, etc, and she always bounces back,(she hadA/Bhonor roll all year last year, in spite of a hospitalization the first week of school, and the beginning of second semester this past school year),but seeing that she will now have to go in the hospital more frequently for treatments from now on, I think it would be a good idea to have a plan in place. </P>
<P>In the older grades, they normally aren't granted to have snacks between meals, so I mentioned this to the doctor, and he said that I need to mention this during the meeting, because she HAS to have 3,300-3,500 calories a day right now, to gain weight. (A dietician calculated her intake each day, and averaged what she ate daily, during her stay for me, so I could have some idea of how many calories she needs. So, now, snacks are not an option, they're a necessity. <img src="i/expressions/face-icon-small-smile.gif" border="0">It's hard to believe she'll be in 5th grade this year! sniff, sniff. <img src="i/expressions/face-icon-small-smile.gif" border="0"></P>
<P></P>
<P>In the older grades, they normally aren't granted to have snacks between meals, so I mentioned this to the doctor, and he said that I need to mention this during the meeting, because she HAS to have 3,300-3,500 calories a day right now, to gain weight. (A dietician calculated her intake each day, and averaged what she ate daily, during her stay for me, so I could have some idea of how many calories she needs. So, now, snacks are not an option, they're a necessity. <img src="i/expressions/face-icon-small-smile.gif" border="0">It's hard to believe she'll be in 5th grade this year! sniff, sniff. <img src="i/expressions/face-icon-small-smile.gif" border="0"></P>
<P></P>
T
TonyaH
Guest
<P>Aside from everything that has already been mentioned, I will add a couple of items I have on Andrew's plan. These really are more 'middle school' needs, but depending on Alyssa's needs, they may help her.</P>
<P>1. Andrew always recieves as 'end' locker so he's not trapped in tight corners when he has a picc line. If Alyssa ever attends school with a picc, she may benefit from an 'end' cubby.</P>
<P> 2. Gum or breath mints. When Andrew has an infection, his breath is very unpleasant. I have his 504 noted that he is allowed to use breath mints or gum in school to avoid embarassing issues.</P>
<P> </P>
<P>I also wanted to mention that I go a step farther than just requesting he not be placed in class with other CFers. I also am in communication with my daughter's elementary school principal to ensure she is not placed in class with a CF patient, or sibling of a CF patient. (to the best of the school's knowledge) I don't know what your relationship is with your principal, but I'll bet they could make arrangements for your boys as well. Germs travel....and with daily contact with classmates you just never know what ALL of your children are bringing home.</P>
<P> </P>
<P> </P>
<P>1. Andrew always recieves as 'end' locker so he's not trapped in tight corners when he has a picc line. If Alyssa ever attends school with a picc, she may benefit from an 'end' cubby.</P>
<P> 2. Gum or breath mints. When Andrew has an infection, his breath is very unpleasant. I have his 504 noted that he is allowed to use breath mints or gum in school to avoid embarassing issues.</P>
<P> </P>
<P>I also wanted to mention that I go a step farther than just requesting he not be placed in class with other CFers. I also am in communication with my daughter's elementary school principal to ensure she is not placed in class with a CF patient, or sibling of a CF patient. (to the best of the school's knowledge) I don't know what your relationship is with your principal, but I'll bet they could make arrangements for your boys as well. Germs travel....and with daily contact with classmates you just never know what ALL of your children are bringing home.</P>
<P> </P>
<P> </P>