CF children in school

[dragonlady]

My daughter packs a light lunch, something she can eat under 25 minutes because she is a real slow eater. She manages her pills herself now that she is older, but before she was allowed to leave 5 minutes prior to lunch to take them.

Then I would cordinate her schedule for a non academic time for her to go to the nurse for a second snack, small lunch or milkshake that the nurse keeps for her in the fridge. My daughter drops this "lunch" off right away in the morning and continues to class. She still has time for recess with is important to get outside for some excersise.

Either an IEP, or a 504 plan with the school can help set this up for you. I meet with the nurse, her teachers or teacher, and the vice principal and come up with a schedule that meet her educational and health needs.

Good luck!

 

[dragonlady]

My daughter packs a light lunch, something she can eat under 25 minutes because she is a real slow eater. She manages her pills herself now that she is older, but before she was allowed to leave 5 minutes prior to lunch to take them.

Then I would cordinate her schedule for a non academic time for her to go to the nurse for a second snack, small lunch or milkshake that the nurse keeps for her in the fridge. My daughter drops this "lunch" off right away in the morning and continues to class. She still has time for recess with is important to get outside for some excersise.

Either an IEP, or a 504 plan with the school can help set this up for you. I meet with the nurse, her teachers or teacher, and the vice principal and come up with a schedule that meet her educational and health needs.

Good luck!

 

[dragonlady]

My daughter packs a light lunch, something she can eat under 25 minutes because she is a real slow eater. She manages her pills herself now that she is older, but before she was allowed to leave 5 minutes prior to lunch to take them.

Then I would cordinate her schedule for a non academic time for her to go to the nurse for a second snack, small lunch or milkshake that the nurse keeps for her in the fridge. My daughter drops this "lunch" off right away in the morning and continues to class. She still has time for recess with is important to get outside for some excersise.

Either an IEP, or a 504 plan with the school can help set this up for you. I meet with the nurse, her teachers or teacher, and the vice principal and come up with a schedule that meet her educational and health needs.

Good luck!

 

[dragonlady]

My daughter packs a light lunch, something she can eat under 25 minutes because she is a real slow eater. She manages her pills herself now that she is older, but before she was allowed to leave 5 minutes prior to lunch to take them.

Then I would cordinate her schedule for a non academic time for her to go to the nurse for a second snack, small lunch or milkshake that the nurse keeps for her in the fridge. My daughter drops this "lunch" off right away in the morning and continues to class. She still has time for recess with is important to get outside for some excersise.

Either an IEP, or a 504 plan with the school can help set this up for you. I meet with the nurse, her teachers or teacher, and the vice principal and come up with a schedule that meet her educational and health needs.

Good luck!

 

[dragonlady]

My daughter packs a light lunch, something she can eat under 25 minutes because she is a real slow eater. She manages her pills herself now that she is older, but before she was allowed to leave 5 minutes prior to lunch to take them.
<br />
<br />Then I would cordinate her schedule for a non academic time for her to go to the nurse for a second snack, small lunch or milkshake that the nurse keeps for her in the fridge. My daughter drops this "lunch" off right away in the morning and continues to class. She still has time for recess with is important to get outside for some excersise.
<br />
<br />Either an IEP, or a 504 plan with the school can help set this up for you. I meet with the nurse, her teachers or teacher, and the vice principal and come up with a schedule that meet her educational and health needs.
<br />
<br />Good luck!

 

[jendonl]

We have also had a lot of problems with our dd and eating though things seem to be much better now.
We also had a nurse at school who insisted that all medications had to be administered in the Nurse's office. We were adamant that she not be required to run to the nurse's office where sick kids hang out every time she needed an enzyme. We made no headway with the nurse so we set up a meeting with the principle, the school counselor, and the person in charge of 504 plans for the school. It was a very pleasant meeting and we got everything we asked for, which was to have someone bring the enzymes to the classroom just prior to snack time.
She's only in half day kindergarten now but next year they have agreed to have someone at the lunchroom when she needs her enzymes.
We strongly believe that she should not have to take time out of her playtime, lunchtime or lesson time to go get her required medications. We would much prefer she has her medications with her and take them as needed, but if they insist on following their procedures in not allowing her to self-medicate, then they should be the ones to take the extra time for it, not her.

Bottom line: set up a meeting with the principle and whoever you can think might be your advocate. It's likely you will find they are much more willing and able to help you than the nurse who may have her own agenda and fifedom to defend.

 

[jendonl]

We have also had a lot of problems with our dd and eating though things seem to be much better now.
We also had a nurse at school who insisted that all medications had to be administered in the Nurse's office. We were adamant that she not be required to run to the nurse's office where sick kids hang out every time she needed an enzyme. We made no headway with the nurse so we set up a meeting with the principle, the school counselor, and the person in charge of 504 plans for the school. It was a very pleasant meeting and we got everything we asked for, which was to have someone bring the enzymes to the classroom just prior to snack time.
She's only in half day kindergarten now but next year they have agreed to have someone at the lunchroom when she needs her enzymes.
We strongly believe that she should not have to take time out of her playtime, lunchtime or lesson time to go get her required medications. We would much prefer she has her medications with her and take them as needed, but if they insist on following their procedures in not allowing her to self-medicate, then they should be the ones to take the extra time for it, not her.

Bottom line: set up a meeting with the principle and whoever you can think might be your advocate. It's likely you will find they are much more willing and able to help you than the nurse who may have her own agenda and fifedom to defend.

 

[jendonl]

We have also had a lot of problems with our dd and eating though things seem to be much better now.
We also had a nurse at school who insisted that all medications had to be administered in the Nurse's office. We were adamant that she not be required to run to the nurse's office where sick kids hang out every time she needed an enzyme. We made no headway with the nurse so we set up a meeting with the principle, the school counselor, and the person in charge of 504 plans for the school. It was a very pleasant meeting and we got everything we asked for, which was to have someone bring the enzymes to the classroom just prior to snack time.
She's only in half day kindergarten now but next year they have agreed to have someone at the lunchroom when she needs her enzymes.
We strongly believe that she should not have to take time out of her playtime, lunchtime or lesson time to go get her required medications. We would much prefer she has her medications with her and take them as needed, but if they insist on following their procedures in not allowing her to self-medicate, then they should be the ones to take the extra time for it, not her.

Bottom line: set up a meeting with the principle and whoever you can think might be your advocate. It's likely you will find they are much more willing and able to help you than the nurse who may have her own agenda and fifedom to defend.

 

[jendonl]

We have also had a lot of problems with our dd and eating though things seem to be much better now.
We also had a nurse at school who insisted that all medications had to be administered in the Nurse's office. We were adamant that she not be required to run to the nurse's office where sick kids hang out every time she needed an enzyme. We made no headway with the nurse so we set up a meeting with the principle, the school counselor, and the person in charge of 504 plans for the school. It was a very pleasant meeting and we got everything we asked for, which was to have someone bring the enzymes to the classroom just prior to snack time.
She's only in half day kindergarten now but next year they have agreed to have someone at the lunchroom when she needs her enzymes.
We strongly believe that she should not have to take time out of her playtime, lunchtime or lesson time to go get her required medications. We would much prefer she has her medications with her and take them as needed, but if they insist on following their procedures in not allowing her to self-medicate, then they should be the ones to take the extra time for it, not her.

Bottom line: set up a meeting with the principle and whoever you can think might be your advocate. It's likely you will find they are much more willing and able to help you than the nurse who may have her own agenda and fifedom to defend.

 

[jendonl]

We have also had a lot of problems with our dd and eating though things seem to be much better now.
<br />We also had a nurse at school who insisted that all medications had to be administered in the Nurse's office. We were adamant that she not be required to run to the nurse's office where sick kids hang out every time she needed an enzyme. We made no headway with the nurse so we set up a meeting with the principle, the school counselor, and the person in charge of 504 plans for the school. It was a very pleasant meeting and we got everything we asked for, which was to have someone bring the enzymes to the classroom just prior to snack time.
<br />She's only in half day kindergarten now but next year they have agreed to have someone at the lunchroom when she needs her enzymes.
<br />We strongly believe that she should not have to take time out of her playtime, lunchtime or lesson time to go get her required medications. We would much prefer she has her medications with her and take them as needed, but if they insist on following their procedures in not allowing her to self-medicate, then they should be the ones to take the extra time for it, not her.
<br />
<br />Bottom line: set up a meeting with the principle and whoever you can think might be your advocate. It's likely you will find they are much more willing and able to help you than the nurse who may have her own agenda and fifedom to defend.

 

[PatrickM]

When my son was in second grade in 2005 the school nurse insisted he walk down to her office to get his enzymes. Prior to this his teacher administered his enzymes. The walk to and from the nurses office took 10 minutes and then he arrived late to lunch, couldn't get a seat, etc. It was a totally unacceptable situation in my opinion. Fortunately at the same time there was a bill before the House of Representatives in Massachusetts that would allow children with CF to administer their own enzymes. I contacted the representative who wrote the bill and also happened to have a son with CF, and I think they were able to get he bill fast tracked. The bill was signed and the Governor signed an emergency preamble to sign it in to law immediately that students with CF in Massachusetts can administer their own enzymes. Since then I have taught my son when and how many enzymes to take and it has been so helpful. I just pack his enzymes in his lunch bag and I have since trusted him to take the proper amount. Feel free to PM me if I can help you but definitely contact your state representative and try to get a bill like this passed in your state. I still have a copy of the original bill if that is helpful to you.

Tara

 

[PatrickM]

When my son was in second grade in 2005 the school nurse insisted he walk down to her office to get his enzymes. Prior to this his teacher administered his enzymes. The walk to and from the nurses office took 10 minutes and then he arrived late to lunch, couldn't get a seat, etc. It was a totally unacceptable situation in my opinion. Fortunately at the same time there was a bill before the House of Representatives in Massachusetts that would allow children with CF to administer their own enzymes. I contacted the representative who wrote the bill and also happened to have a son with CF, and I think they were able to get he bill fast tracked. The bill was signed and the Governor signed an emergency preamble to sign it in to law immediately that students with CF in Massachusetts can administer their own enzymes. Since then I have taught my son when and how many enzymes to take and it has been so helpful. I just pack his enzymes in his lunch bag and I have since trusted him to take the proper amount. Feel free to PM me if I can help you but definitely contact your state representative and try to get a bill like this passed in your state. I still have a copy of the original bill if that is helpful to you.

Tara

 

[PatrickM]

When my son was in second grade in 2005 the school nurse insisted he walk down to her office to get his enzymes. Prior to this his teacher administered his enzymes. The walk to and from the nurses office took 10 minutes and then he arrived late to lunch, couldn't get a seat, etc. It was a totally unacceptable situation in my opinion. Fortunately at the same time there was a bill before the House of Representatives in Massachusetts that would allow children with CF to administer their own enzymes. I contacted the representative who wrote the bill and also happened to have a son with CF, and I think they were able to get he bill fast tracked. The bill was signed and the Governor signed an emergency preamble to sign it in to law immediately that students with CF in Massachusetts can administer their own enzymes. Since then I have taught my son when and how many enzymes to take and it has been so helpful. I just pack his enzymes in his lunch bag and I have since trusted him to take the proper amount. Feel free to PM me if I can help you but definitely contact your state representative and try to get a bill like this passed in your state. I still have a copy of the original bill if that is helpful to you.

Tara

 

[PatrickM]

When my son was in second grade in 2005 the school nurse insisted he walk down to her office to get his enzymes. Prior to this his teacher administered his enzymes. The walk to and from the nurses office took 10 minutes and then he arrived late to lunch, couldn't get a seat, etc. It was a totally unacceptable situation in my opinion. Fortunately at the same time there was a bill before the House of Representatives in Massachusetts that would allow children with CF to administer their own enzymes. I contacted the representative who wrote the bill and also happened to have a son with CF, and I think they were able to get he bill fast tracked. The bill was signed and the Governor signed an emergency preamble to sign it in to law immediately that students with CF in Massachusetts can administer their own enzymes. Since then I have taught my son when and how many enzymes to take and it has been so helpful. I just pack his enzymes in his lunch bag and I have since trusted him to take the proper amount. Feel free to PM me if I can help you but definitely contact your state representative and try to get a bill like this passed in your state. I still have a copy of the original bill if that is helpful to you.

Tara

 

[PatrickM]

When my son was in second grade in 2005 the school nurse insisted he walk down to her office to get his enzymes. Prior to this his teacher administered his enzymes. The walk to and from the nurses office took 10 minutes and then he arrived late to lunch, couldn't get a seat, etc. It was a totally unacceptable situation in my opinion. Fortunately at the same time there was a bill before the House of Representatives in Massachusetts that would allow children with CF to administer their own enzymes. I contacted the representative who wrote the bill and also happened to have a son with CF, and I think they were able to get he bill fast tracked. The bill was signed and the Governor signed an emergency preamble to sign it in to law immediately that students with CF in Massachusetts can administer their own enzymes. Since then I have taught my son when and how many enzymes to take and it has been so helpful. I just pack his enzymes in his lunch bag and I have since trusted him to take the proper amount. Feel free to PM me if I can help you but definitely contact your state representative and try to get a bill like this passed in your state. I still have a copy of the original bill if that is helpful to you.
<br />
<br />Tara

 

[hmw]

I sort of understand the position the schools are in when it comes to meds. I'm going to play devil's advocate a little here, so bear with me a bit but try to understand a bit.

To start with, in many cases it is not the individual schools that make the decisions on how to handle the 'med issue.' It's often a district, or even a STATE policy or law. They might want things to be different but have no say in it at all.

There are many other students that require daily meds for real, legitimate medical conditions. The stance of 'I don't want my child interrupted, so I expect a busy nurse who has sick children and multiple other responsibilities to attend to all day to come to my child twice a day (esp. if the classroom is at the other end of the campus) to administer their medication' when their are OTHER kids with health conditions just as serious who must take time away from their education, playtime and snack/lunchtime to trek across the school to go get their medication' would probably not seem very fair to the parents of those other kids. I know it's a stance we take because we don't like existing policy, but still... if roles were reversed and it was other kids getting this treatment while our child had to do the walking to the nurse, we'd probably be pretty upset.

I am not saying that I don't believe our child should be able to take enzymes in the classroom on their own. I think this is the ideal solution, under certain conditions: if they can be LOCKED in the classroom (i.e. a month's worth at a time), as this is what I'd want of another child's medication, and if transported to the school by the parent and not by the child on the bus. IMO, The bus is not the place for *any* prescription medication. We all would need to work with the teachers to be sure our kids understand how many they need to be taking, etc ...they are all capable of different levels of independence at different ages.

Just my opinion... I don't want to offend anyone, but sometimes it's easy to forget where the schools are coming from too and/or assume they don't 'want' to be cooperative in situations that may be truly beyond their control (as well as what the position of the other parents would be if they were aware of our situation; and the schools need to think of everyone.)

 

[hmw]

I sort of understand the position the schools are in when it comes to meds. I'm going to play devil's advocate a little here, so bear with me a bit but try to understand a bit.

To start with, in many cases it is not the individual schools that make the decisions on how to handle the 'med issue.' It's often a district, or even a STATE policy or law. They might want things to be different but have no say in it at all.

There are many other students that require daily meds for real, legitimate medical conditions. The stance of 'I don't want my child interrupted, so I expect a busy nurse who has sick children and multiple other responsibilities to attend to all day to come to my child twice a day (esp. if the classroom is at the other end of the campus) to administer their medication' when their are OTHER kids with health conditions just as serious who must take time away from their education, playtime and snack/lunchtime to trek across the school to go get their medication' would probably not seem very fair to the parents of those other kids. I know it's a stance we take because we don't like existing policy, but still... if roles were reversed and it was other kids getting this treatment while our child had to do the walking to the nurse, we'd probably be pretty upset.

I am not saying that I don't believe our child should be able to take enzymes in the classroom on their own. I think this is the ideal solution, under certain conditions: if they can be LOCKED in the classroom (i.e. a month's worth at a time), as this is what I'd want of another child's medication, and if transported to the school by the parent and not by the child on the bus. IMO, The bus is not the place for *any* prescription medication. We all would need to work with the teachers to be sure our kids understand how many they need to be taking, etc ...they are all capable of different levels of independence at different ages.

Just my opinion... I don't want to offend anyone, but sometimes it's easy to forget where the schools are coming from too and/or assume they don't 'want' to be cooperative in situations that may be truly beyond their control (as well as what the position of the other parents would be if they were aware of our situation; and the schools need to think of everyone.)

 

[hmw]

I sort of understand the position the schools are in when it comes to meds. I'm going to play devil's advocate a little here, so bear with me a bit but try to understand a bit.

To start with, in many cases it is not the individual schools that make the decisions on how to handle the 'med issue.' It's often a district, or even a STATE policy or law. They might want things to be different but have no say in it at all.

There are many other students that require daily meds for real, legitimate medical conditions. The stance of 'I don't want my child interrupted, so I expect a busy nurse who has sick children and multiple other responsibilities to attend to all day to come to my child twice a day (esp. if the classroom is at the other end of the campus) to administer their medication' when their are OTHER kids with health conditions just as serious who must take time away from their education, playtime and snack/lunchtime to trek across the school to go get their medication' would probably not seem very fair to the parents of those other kids. I know it's a stance we take because we don't like existing policy, but still... if roles were reversed and it was other kids getting this treatment while our child had to do the walking to the nurse, we'd probably be pretty upset.

I am not saying that I don't believe our child should be able to take enzymes in the classroom on their own. I think this is the ideal solution, under certain conditions: if they can be LOCKED in the classroom (i.e. a month's worth at a time), as this is what I'd want of another child's medication, and if transported to the school by the parent and not by the child on the bus. IMO, The bus is not the place for *any* prescription medication. We all would need to work with the teachers to be sure our kids understand how many they need to be taking, etc ...they are all capable of different levels of independence at different ages.

Just my opinion... I don't want to offend anyone, but sometimes it's easy to forget where the schools are coming from too and/or assume they don't 'want' to be cooperative in situations that may be truly beyond their control (as well as what the position of the other parents would be if they were aware of our situation; and the schools need to think of everyone.)

 

[hmw]

I sort of understand the position the schools are in when it comes to meds. I'm going to play devil's advocate a little here, so bear with me a bit but try to understand a bit.

To start with, in many cases it is not the individual schools that make the decisions on how to handle the 'med issue.' It's often a district, or even a STATE policy or law. They might want things to be different but have no say in it at all.

There are many other students that require daily meds for real, legitimate medical conditions. The stance of 'I don't want my child interrupted, so I expect a busy nurse who has sick children and multiple other responsibilities to attend to all day to come to my child twice a day (esp. if the classroom is at the other end of the campus) to administer their medication' when their are OTHER kids with health conditions just as serious who must take time away from their education, playtime and snack/lunchtime to trek across the school to go get their medication' would probably not seem very fair to the parents of those other kids. I know it's a stance we take because we don't like existing policy, but still... if roles were reversed and it was other kids getting this treatment while our child had to do the walking to the nurse, we'd probably be pretty upset.

I am not saying that I don't believe our child should be able to take enzymes in the classroom on their own. I think this is the ideal solution, under certain conditions: if they can be LOCKED in the classroom (i.e. a month's worth at a time), as this is what I'd want of another child's medication, and if transported to the school by the parent and not by the child on the bus. IMO, The bus is not the place for *any* prescription medication. We all would need to work with the teachers to be sure our kids understand how many they need to be taking, etc ...they are all capable of different levels of independence at different ages.

Just my opinion... I don't want to offend anyone, but sometimes it's easy to forget where the schools are coming from too and/or assume they don't 'want' to be cooperative in situations that may be truly beyond their control (as well as what the position of the other parents would be if they were aware of our situation; and the schools need to think of everyone.)

 

[hmw]

I sort of understand the position the schools are in when it comes to meds. I'm going to play devil's advocate a little here, so bear with me a bit but try to understand a bit.
<br />
<br />To start with, in many cases it is not the individual schools that make the decisions on how to handle the 'med issue.' It's often a district, or even a STATE policy or law. They might want things to be different but have no say in it at all.
<br />
<br />There are many other students that require daily meds for real, legitimate medical conditions. The stance of 'I don't want my child interrupted, so I expect a busy nurse who has sick children and multiple other responsibilities to attend to all day to come to my child twice a day (esp. if the classroom is at the other end of the campus) to administer their medication' when their are OTHER kids with health conditions just as serious who must take time away from their education, playtime and snack/lunchtime to trek across the school to go get their medication' would probably not seem very fair to the parents of those other kids. I know it's a stance we take because we don't like existing policy, but still... if roles were reversed and it was other kids getting this treatment while our child had to do the walking to the nurse, we'd probably be pretty upset.
<br />
<br />I am not saying that I don't believe our child should be able to take enzymes in the classroom on their own. I think this is the ideal solution, under certain conditions: if they can be LOCKED in the classroom (i.e. a month's worth at a time), as this is what I'd want of another child's medication, and if transported to the school by the parent and not by the child on the bus. IMO, The bus is not the place for *any* prescription medication. We all would need to work with the teachers to be sure our kids understand how many they need to be taking, etc ...they are all capable of different levels of independence at different ages.
<br />
<br />Just my opinion... I don't want to offend anyone, but sometimes it's easy to forget where the schools are coming from too and/or assume they don't 'want' to be cooperative in situations that may be truly beyond their control (as well as what the position of the other parents would be if they were aware of our situation; and the schools need to think of everyone.)