How much school do your kids miss?

[hmw]

This is driving me nuts. Fortunately, we don't take much flak from the school... Emily has an IEP with a good health plan and her absences are excused for health reasons and she doesn't get inundated with more makeup work than she can manage either.

However, the amount of school she has to miss when she has exacerbations (not to mention all the drs appts) is so frustrating. When she is really sick, we do her vest and nebs 4x/day (morning, lunchtime, afternoon, bedtime)- she can't go to school on that schedule. Each session, if she never stopped it, would take 30min. Realistically speaking, they take about 45min when she's sick given her stopping it every 2min for a fit of coughing and spitting.

Am I the only one who nearly always ends up having to keep her home for a week when she has an exacerbation? Is this excessive? Earlier on I would try to send her back sooner (provided she was eating some and didn't have a fever and had at least some energy) and do treatments 3x day but that just doesn't work well for her- it takes too long for her to get better and she loses too much weight.

It was really unhelpful hearing last year about the other child with cf who 'never missed a day of school' and was so very healthy. Fine. I'm very happy for her. She was dx'ed as a newborn, had benefit of treatment from the start and is huge compared to Emily. At least this year's nurse doesn't do that.

As you can probably guess, Emily is home sick again (for the 2nd time in 4wks.)

 

[hmw]

This is driving me nuts. Fortunately, we don't take much flak from the school... Emily has an IEP with a good health plan and her absences are excused for health reasons and she doesn't get inundated with more makeup work than she can manage either.

However, the amount of school she has to miss when she has exacerbations (not to mention all the drs appts) is so frustrating. When she is really sick, we do her vest and nebs 4x/day (morning, lunchtime, afternoon, bedtime)- she can't go to school on that schedule. Each session, if she never stopped it, would take 30min. Realistically speaking, they take about 45min when she's sick given her stopping it every 2min for a fit of coughing and spitting.

Am I the only one who nearly always ends up having to keep her home for a week when she has an exacerbation? Is this excessive? Earlier on I would try to send her back sooner (provided she was eating some and didn't have a fever and had at least some energy) and do treatments 3x day but that just doesn't work well for her- it takes too long for her to get better and she loses too much weight.

It was really unhelpful hearing last year about the other child with cf who 'never missed a day of school' and was so very healthy. Fine. I'm very happy for her. She was dx'ed as a newborn, had benefit of treatment from the start and is huge compared to Emily. At least this year's nurse doesn't do that.

As you can probably guess, Emily is home sick again (for the 2nd time in 4wks.)

 

[hmw]

This is driving me nuts. Fortunately, we don't take much flak from the school... Emily has an IEP with a good health plan and her absences are excused for health reasons and she doesn't get inundated with more makeup work than she can manage either.
<br />
<br />However, the amount of school she has to miss when she has exacerbations (not to mention all the drs appts) is so frustrating. When she is really sick, we do her vest and nebs 4x/day (morning, lunchtime, afternoon, bedtime)- she can't go to school on that schedule. Each session, if she never stopped it, would take 30min. Realistically speaking, they take about 45min when she's sick given her stopping it every 2min for a fit of coughing and spitting.
<br />
<br />Am I the only one who nearly always ends up having to keep her home for a week when she has an exacerbation? Is this excessive? Earlier on I would try to send her back sooner (provided she was eating some and didn't have a fever and had at least some energy) and do treatments 3x day but that just doesn't work well for her- it takes too long for her to get better and she loses too much weight.
<br />
<br />It was really unhelpful hearing last year about the other child with cf who 'never missed a day of school' and was so very healthy. Fine. I'm very happy for her. She was dx'ed as a newborn, had benefit of treatment from the start and is huge compared to Emily. At least this year's nurse doesn't do that.
<br />
<br />As you can probably guess, Emily is home sick again (for the 2nd time in 4wks.)

 

[Rebjane]

Harriet,

Each CF kid is different. I am actually not sure how much school Maggie has missed this year. When she has an exacerbation or gets sick; we play it by ear. I tend to do half days when Maggie is on her strong anti's and needing more nebs and VEST time(that is as long as she is fever free). That way Maggie can get some school time in and VEST time. I also have the teacher send home her work if she misses more than one day(yes I know its's only first grade) but it's a good habit and Maggie hates missing out on anything.

I know there will come a time when she misses a big chunk of school. Emily's health comes first..I hope she feels better soon. You do a great job.

Rebecca

 

[Rebjane]

Harriet,

Each CF kid is different. I am actually not sure how much school Maggie has missed this year. When she has an exacerbation or gets sick; we play it by ear. I tend to do half days when Maggie is on her strong anti's and needing more nebs and VEST time(that is as long as she is fever free). That way Maggie can get some school time in and VEST time. I also have the teacher send home her work if she misses more than one day(yes I know its's only first grade) but it's a good habit and Maggie hates missing out on anything.

I know there will come a time when she misses a big chunk of school. Emily's health comes first..I hope she feels better soon. You do a great job.

Rebecca

 

[Rebjane]

Harriet,
<br />
<br />Each CF kid is different. I am actually not sure how much school Maggie has missed this year. When she has an exacerbation or gets sick; we play it by ear. I tend to do half days when Maggie is on her strong anti's and needing more nebs and VEST time(that is as long as she is fever free). That way Maggie can get some school time in and VEST time. I also have the teacher send home her work if she misses more than one day(yes I know its's only first grade) but it's a good habit and Maggie hates missing out on anything.
<br />
<br />I know there will come a time when she misses a big chunk of school. Emily's health comes first..I hope she feels better soon. You do a great job.
<br />
<br />Rebecca

 

[debs2girls]

Chey misses the occassional day here and there. She goes into the hospital every three months for two weeks and then is on home IV's for 3-5 more weeks. So in Sept, Dec and March she is out at anywhere from 3-7 weeks depending on IV schedule. She misses tons of school. I worry as she gets older and the work gets harder, she wont be able to keep up.

 

[debs2girls]

Chey misses the occassional day here and there. She goes into the hospital every three months for two weeks and then is on home IV's for 3-5 more weeks. So in Sept, Dec and March she is out at anywhere from 3-7 weeks depending on IV schedule. She misses tons of school. I worry as she gets older and the work gets harder, she wont be able to keep up.

 

[debs2girls]

Chey misses the occassional day here and there. She goes into the hospital every three months for two weeks and then is on home IV's for 3-5 more weeks. So in Sept, Dec and March she is out at anywhere from 3-7 weeks depending on IV schedule. She misses tons of school. I worry as she gets older and the work gets harder, she wont be able to keep up.

 

[Fancymushroom]

It is so incredibly frustrating, you're right to find it worrying. It really is the same as most other aspects of CF though - everyone is different. As someone who was also diagnosed late and spent all of my school career coughing and haveing to leave lessons to be sick/have diarrheoa, being physically smaller than my peers, being tired, going to the school office and getting sent home, trying to attend school but then having to spend a week at home.. etc, I know it's a vicious cycle. You get just about well enough to get back to school then you get run down and start with another infection.
Basically I have no advice other than to carry on with doing EXACTLY what is best for Emily - there's no point pushing attendance when she is ill as she won't get any work done that way anyway. I couldn't concentrate on anything with constant coughing and difficulty breathing. And it won't get her healthier either. Unfortunately it's not an easy thing to get around.
I'm at university now and I certainly miss periods when I'm forced to go in to hospital or am stuck in my room with fevers and shortness of breath. I'm not exactly getting any healthier as I age lol! However, my lecturers know about the condition, I have the equivalent of an IEP and I don't ever get graded down for it. I'm allowed to complete work in my own time when I'm having a bad patch with my health as this way I don't get myself more worked up and ill trying to get everything in on time. I also sit my exams in a separate room so that I don't feel I have to surpress my coughs like I did all the way through school. This might be worth doing when Emily reaches exam age.
I'm sorry you're all going through this and sorry that there isn't an easy solution. I think it just has to be another (very annoying) part of the CF package for some people. I can say though, that Emily sounds a very clever and capable person and for that reason, missing school at this stage shouldn't slow her down in the grand scheme of things. As soon as she is recovering from an infection but still home, I bet she is playing, reading, drawing and getting some form of education albeit not in a formal 'sit in class' way. At her age the play and the personal development in reading etc must be more important than sitting doing sums.
X

 

[Fancymushroom]

It is so incredibly frustrating, you're right to find it worrying. It really is the same as most other aspects of CF though - everyone is different. As someone who was also diagnosed late and spent all of my school career coughing and haveing to leave lessons to be sick/have diarrheoa, being physically smaller than my peers, being tired, going to the school office and getting sent home, trying to attend school but then having to spend a week at home.. etc, I know it's a vicious cycle. You get just about well enough to get back to school then you get run down and start with another infection.
Basically I have no advice other than to carry on with doing EXACTLY what is best for Emily - there's no point pushing attendance when she is ill as she won't get any work done that way anyway. I couldn't concentrate on anything with constant coughing and difficulty breathing. And it won't get her healthier either. Unfortunately it's not an easy thing to get around.
I'm at university now and I certainly miss periods when I'm forced to go in to hospital or am stuck in my room with fevers and shortness of breath. I'm not exactly getting any healthier as I age lol! However, my lecturers know about the condition, I have the equivalent of an IEP and I don't ever get graded down for it. I'm allowed to complete work in my own time when I'm having a bad patch with my health as this way I don't get myself more worked up and ill trying to get everything in on time. I also sit my exams in a separate room so that I don't feel I have to surpress my coughs like I did all the way through school. This might be worth doing when Emily reaches exam age.
I'm sorry you're all going through this and sorry that there isn't an easy solution. I think it just has to be another (very annoying) part of the CF package for some people. I can say though, that Emily sounds a very clever and capable person and for that reason, missing school at this stage shouldn't slow her down in the grand scheme of things. As soon as she is recovering from an infection but still home, I bet she is playing, reading, drawing and getting some form of education albeit not in a formal 'sit in class' way. At her age the play and the personal development in reading etc must be more important than sitting doing sums.
X

 

[Fancymushroom]

It is so incredibly frustrating, you're right to find it worrying. It really is the same as most other aspects of CF though - everyone is different. As someone who was also diagnosed late and spent all of my school career coughing and haveing to leave lessons to be sick/have diarrheoa, being physically smaller than my peers, being tired, going to the school office and getting sent home, trying to attend school but then having to spend a week at home.. etc, I know it's a vicious cycle. You get just about well enough to get back to school then you get run down and start with another infection.
<br />Basically I have no advice other than to carry on with doing EXACTLY what is best for Emily - there's no point pushing attendance when she is ill as she won't get any work done that way anyway. I couldn't concentrate on anything with constant coughing and difficulty breathing. And it won't get her healthier either. Unfortunately it's not an easy thing to get around.
<br />I'm at university now and I certainly miss periods when I'm forced to go in to hospital or am stuck in my room with fevers and shortness of breath. I'm not exactly getting any healthier as I age lol! However, my lecturers know about the condition, I have the equivalent of an IEP and I don't ever get graded down for it. I'm allowed to complete work in my own time when I'm having a bad patch with my health as this way I don't get myself more worked up and ill trying to get everything in on time. I also sit my exams in a separate room so that I don't feel I have to surpress my coughs like I did all the way through school. This might be worth doing when Emily reaches exam age.
<br />I'm sorry you're all going through this and sorry that there isn't an easy solution. I think it just has to be another (very annoying) part of the CF package for some people. I can say though, that Emily sounds a very clever and capable person and for that reason, missing school at this stage shouldn't slow her down in the grand scheme of things. As soon as she is recovering from an infection but still home, I bet she is playing, reading, drawing and getting some form of education albeit not in a formal 'sit in class' way. At her age the play and the personal development in reading etc must be more important than sitting doing sums.
<br />X
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