Portrayed Life Expectancy Affecting Life Decisions

[Beccamom]

Mistyjo
I agree that you should get a 504 plan before Kindergarten starts even if it has very few accomodations it can state that homebound instruction will be given if ---- criteria are met. My daughter had an asthma diagnosis, and had a 504 since Kindergarten. I just met with the school nurse the week before school started and she was so surprized by the number of medicines and illnesses so far that she recommended the 504. At that time I had never heard of it.
Harriet it is odd, but my daughter's decreased lung function and significant obstructive airway on PFT #s as well as decreased weight and increased illnesses all hit hard in fourth grade. I am hopeful with proper treatment she will have less illnesses this year as she is going into 7th grade the work load keeps increasing.

 

[Beccamom]

Mistyjo
I agree that you should get a 504 plan before Kindergarten starts even if it has very few accomodations it can state that homebound instruction will be given if ---- criteria are met. My daughter had an asthma diagnosis, and had a 504 since Kindergarten. I just met with the school nurse the week before school started and she was so surprized by the number of medicines and illnesses so far that she recommended the 504. At that time I had never heard of it.
Harriet it is odd, but my daughter's decreased lung function and significant obstructive airway on PFT #s as well as decreased weight and increased illnesses all hit hard in fourth grade. I am hopeful with proper treatment she will have less illnesses this year as she is going into 7th grade the work load keeps increasing.

 

[Beccamom]

Mistyjo
<br />I agree that you should get a 504 plan before Kindergarten starts even if it has very few accomodations it can state that homebound instruction will be given if ---- criteria are met. My daughter had an asthma diagnosis, and had a 504 since Kindergarten. I just met with the school nurse the week before school started and she was so surprized by the number of medicines and illnesses so far that she recommended the 504. At that time I had never heard of it.
<br />Harriet it is odd, but my daughter's decreased lung function and significant obstructive airway on PFT #s as well as decreased weight and increased illnesses all hit hard in fourth grade. I am hopeful with proper treatment she will have less illnesses this year as she is going into 7th grade the work load keeps increasing.

 

[hmw]

Appropriate treatment will definitely only HELP!! In Emily's case we learned very early on that when she got sick prior to her dx, abx were never used appropriately and so she wasn't fully recovering and she was sick again soon afterwards. (I was recognizing this pattern and yanking my hair out over it but didn't know what to do about it! Nothing we tried seemed to work!) And of course, we weren't doing cpt or using preventative measures of any kind. Her small airway function on pft's went up so much once we added the nebs she is using now (they still drop a huge amount when sick, much more dramatically than her fev1 and fvc.)

Re. our girls starting to be affected so dramatically at this age (4th grade) ... it makes me think about something our dr had told me about very early changes in hormone levels (which can precede puberty by quite some time) affecting symptoms. It has to do with cf inflammation being affected by these hormone changes.

 

[hmw]

Appropriate treatment will definitely only HELP!! In Emily's case we learned very early on that when she got sick prior to her dx, abx were never used appropriately and so she wasn't fully recovering and she was sick again soon afterwards. (I was recognizing this pattern and yanking my hair out over it but didn't know what to do about it! Nothing we tried seemed to work!) And of course, we weren't doing cpt or using preventative measures of any kind. Her small airway function on pft's went up so much once we added the nebs she is using now (they still drop a huge amount when sick, much more dramatically than her fev1 and fvc.)

Re. our girls starting to be affected so dramatically at this age (4th grade) ... it makes me think about something our dr had told me about very early changes in hormone levels (which can precede puberty by quite some time) affecting symptoms. It has to do with cf inflammation being affected by these hormone changes.

 

[hmw]

Appropriate treatment will definitely only HELP!! In Emily's case we learned very early on that when she got sick prior to her dx, abx were never used appropriately and so she wasn't fully recovering and she was sick again soon afterwards. (I was recognizing this pattern and yanking my hair out over it but didn't know what to do about it! Nothing we tried seemed to work!) And of course, we weren't doing cpt or using preventative measures of any kind. Her small airway function on pft's went up so much once we added the nebs she is using now (they still drop a huge amount when sick, much more dramatically than her fev1 and fvc.)
<br />
<br />Re. our girls starting to be affected so dramatically at this age (4th grade) ... it makes me think about something our dr had told me about very early changes in hormone levels (which can precede puberty by quite some time) affecting symptoms. It has to do with cf inflammation being affected by these hormone changes.

 

[Beccamom]

Harriet
That is exactly what we experienced 4rth grade increased symtpoms and increased hormones. In our house we called the 4rth grade year the nasty nine's. I have wondered if 4rth grade was when my daughter's lungs became colonized with staph. We are on round 3 of oral antibiotics. I prey this with the vest works. Otherwise I fear IV right when school is supposed to start. When the normonex stablize does lung function improve or do psuedonomas tend to get to the lungs before that happens?

It is amazing how much we can get used to as parents. I fear that some of what is delaying my daughter's diagnosis is my thinking she is "healthy" in the summer. "Healthy" I have learned is a relative term. How many times I know I said my daughter was coughing for 3 weeks when I finally took her to the pediatrician because I was sick of the crazy mom looks when I was really thinking she has coughed her whole life, but now I can't stand it because we are both up all night or she is coughing till she throws up.

Until this forum I had no idea that other people had kids born coughing that aknways cough and it gets better and worst yet NEVER goes away.

Than you all for your encouragement. I no longer care if I get the crazy mom look. I am a crazy mom who has a DD who has done things th is summer she has never been able to do before because she isn't healthy, but is her healthiest in many years.

 

[Beccamom]

Harriet
That is exactly what we experienced 4rth grade increased symtpoms and increased hormones. In our house we called the 4rth grade year the nasty nine's. I have wondered if 4rth grade was when my daughter's lungs became colonized with staph. We are on round 3 of oral antibiotics. I prey this with the vest works. Otherwise I fear IV right when school is supposed to start. When the normonex stablize does lung function improve or do psuedonomas tend to get to the lungs before that happens?

It is amazing how much we can get used to as parents. I fear that some of what is delaying my daughter's diagnosis is my thinking she is "healthy" in the summer. "Healthy" I have learned is a relative term. How many times I know I said my daughter was coughing for 3 weeks when I finally took her to the pediatrician because I was sick of the crazy mom looks when I was really thinking she has coughed her whole life, but now I can't stand it because we are both up all night or she is coughing till she throws up.

Until this forum I had no idea that other people had kids born coughing that aknways cough and it gets better and worst yet NEVER goes away.

Than you all for your encouragement. I no longer care if I get the crazy mom look. I am a crazy mom who has a DD who has done things th is summer she has never been able to do before because she isn't healthy, but is her healthiest in many years.

 

[Beccamom]

Harriet
<br />That is exactly what we experienced 4rth grade increased symtpoms and increased hormones. In our house we called the 4rth grade year the nasty nine's. I have wondered if 4rth grade was when my daughter's lungs became colonized with staph. We are on round 3 of oral antibiotics. I prey this with the vest works. Otherwise I fear IV right when school is supposed to start. When the normonex stablize does lung function improve or do psuedonomas tend to get to the lungs before that happens?
<br />
<br />It is amazing how much we can get used to as parents. I fear that some of what is delaying my daughter's diagnosis is my thinking she is "healthy" in the summer. "Healthy" I have learned is a relative term. How many times I know I said my daughter was coughing for 3 weeks when I finally took her to the pediatrician because I was sick of the crazy mom looks when I was really thinking she has coughed her whole life, but now I can't stand it because we are both up all night or she is coughing till she throws up.
<br />
<br />Until this forum I had no idea that other people had kids born coughing that aknways cough and it gets better and worst yet NEVER goes away.
<br />
<br />Than you all for your encouragement. I no longer care if I get the crazy mom look. I am a crazy mom who has a DD who has done things th is summer she has never been able to do before because she isn't healthy, but is her healthiest in many years.
<br />

 

[Mistyjo]

How do I get a 504? Do I need to get a letter from the cf specialist or ped? Can the 504 include all of her bowel issues? What about the enzymes she will be on? I'm sorry for asking all these questions. I just don't want a constant battle with school. At the moment she doesn't have any respiratory problems except for croupe and stridor breathing with it. Her main issues are GI.

 

[Mistyjo]

How do I get a 504? Do I need to get a letter from the cf specialist or ped? Can the 504 include all of her bowel issues? What about the enzymes she will be on? I'm sorry for asking all these questions. I just don't want a constant battle with school. At the moment she doesn't have any respiratory problems except for croupe and stridor breathing with it. Her main issues are GI.

 

[Mistyjo]

How do I get a 504? Do I need to get a letter from the cf specialist or ped? Can the 504 include all of her bowel issues? What about the enzymes she will be on? I'm sorry for asking all these questions. I just don't want a constant battle with school. At the moment she doesn't have any respiratory problems except for croupe and stridor breathing with it. Her main issues are GI.

 

[mneville]

We had an IEP for Aidan when he first started school in NJ. We were adamant he take his OWN enzymes in the classroom and lunchroom beginning with preschool. It was a fight but we eventually won and he has never left the classroom to take enzymes. He is also gifted with an IQ that was formally tested and was in the 140s. At first, we tried to hold him back because he is so young (Sept 16 birthday) but then realized how bright he was. So he is going into 2nd grade now as the youngest boy. But he can handle it academically and socially so we choose to let him go. We switched him to a 504 plan but our school is amazing and follows everything. He misses a lot of school each year and we get home instruction right away. When heis port is accessed, he is allowed to go to the office during recess and gym with a friend to play his DS or IPOD. An air conditioning unit follows him to each room, each year. They are awesome with his health issues now I have to make sure they meet his academic needs.
Megan

 

[mneville]

We had an IEP for Aidan when he first started school in NJ. We were adamant he take his OWN enzymes in the classroom and lunchroom beginning with preschool. It was a fight but we eventually won and he has never left the classroom to take enzymes. He is also gifted with an IQ that was formally tested and was in the 140s. At first, we tried to hold him back because he is so young (Sept 16 birthday) but then realized how bright he was. So he is going into 2nd grade now as the youngest boy. But he can handle it academically and socially so we choose to let him go. We switched him to a 504 plan but our school is amazing and follows everything. He misses a lot of school each year and we get home instruction right away. When heis port is accessed, he is allowed to go to the office during recess and gym with a friend to play his DS or IPOD. An air conditioning unit follows him to each room, each year. They are awesome with his health issues now I have to make sure they meet his academic needs.
Megan

 

[mneville]

We had an IEP for Aidan when he first started school in NJ. We were adamant he take his OWN enzymes in the classroom and lunchroom beginning with preschool. It was a fight but we eventually won and he has never left the classroom to take enzymes. He is also gifted with an IQ that was formally tested and was in the 140s. At first, we tried to hold him back because he is so young (Sept 16 birthday) but then realized how bright he was. So he is going into 2nd grade now as the youngest boy. But he can handle it academically and socially so we choose to let him go. We switched him to a 504 plan but our school is amazing and follows everything. He misses a lot of school each year and we get home instruction right away. When heis port is accessed, he is allowed to go to the office during recess and gym with a friend to play his DS or IPOD. An air conditioning unit follows him to each room, each year. They are awesome with his health issues now I have to make sure they meet his academic needs.
<br />Megan

 

[Beccamom]

Mistyjo
To get a 504 plan I would write a letter requesting a 504 plan and address it to the principal of your school. I would attach a letter from the pulmonologist. Our pulmonologist has a social worker and she has been extremely helpful, so I would call the main number and ask for a pulmonary social worker. As for the enzymes you want a self carry form if you want her take them in the classroom and trust her to remember. As for the bathroom you can request that she can grab a pass and go without asking and that she can use the bathroom in the nurses office. Also ensure that it reads the criteria that would start homebound instruction.

It may not be a quick process the first time. It depends if your district has had a similar request before.

 

[Beccamom]

Mistyjo
To get a 504 plan I would write a letter requesting a 504 plan and address it to the principal of your school. I would attach a letter from the pulmonologist. Our pulmonologist has a social worker and she has been extremely helpful, so I would call the main number and ask for a pulmonary social worker. As for the enzymes you want a self carry form if you want her take them in the classroom and trust her to remember. As for the bathroom you can request that she can grab a pass and go without asking and that she can use the bathroom in the nurses office. Also ensure that it reads the criteria that would start homebound instruction.

It may not be a quick process the first time. It depends if your district has had a similar request before.

 

[Beccamom]

Mistyjo
<br />To get a 504 plan I would write a letter requesting a 504 plan and address it to the principal of your school. I would attach a letter from the pulmonologist. Our pulmonologist has a social worker and she has been extremely helpful, so I would call the main number and ask for a pulmonary social worker. As for the enzymes you want a self carry form if you want her take them in the classroom and trust her to remember. As for the bathroom you can request that she can grab a pass and go without asking and that she can use the bathroom in the nurses office. Also ensure that it reads the criteria that would start homebound instruction.
<br />
<br />It may not be a quick process the first time. It depends if your district has had a similar request before.

 

[pipersmom]

Piper started out with a health plan and now has a 504. To handle the homebound aspect, her plans have always had "automatic homebound instruction after ten cumulative (NOT consecutive) days absent". It hasn't been much of an issue for us the past two years though, last year (4th grade) she was on IVs within 3 weeks of school starting and her CF Doc decided to put her on homebound for the rest of the year. (She had a pattern of not being able to be in school more than 3-4 weeks at a time before needing IVs, and the hope was keeping her out of the environment would help.) We actually do her homebound at the school, after school hours- the classroom gets wiped down, and I think it helps both of from going completely crazy since it's just the two of us to begin with and 24/7 of togetherness can get old.

This year she is starting out on homebound and will not be in the classroom at all. She seems to be in a pattern of needing IVs roughly every six weeks, and our clinic does not allow kids to attend elementary while their port is accessed. The interesting thing to me has been that she is learning and excelling with 5 hrs of instruction a week, and maybe another hrs worth of homework. We love that we can tailor her learning to her needs- last year she did 5th grade science as a 4th grader, and this year will do 6th grade science and either history or english. The school proposed a grade skip to 6th, but she has no interest in doing that, and it isn't something I'm willing to push her into. (She also has Asperger's Syndrome).

To cover the social aspects, Piper is allowed to attend school field trips, field days, etc as medically feasible, and also has a lunch group at school once a week, where she invites 5-6 of her friends, and they all have lunch together. She also participates in the talent show, and the school chorus. Last year she also had recorder lessons from the music teacher after school once a week. We've been very lucky, I think, my understanding is that some school systems want a child to literally not be able to leave the house to grant homebound, Piper's school has always had the attitude that they want her to have as much normalcy as possible. It's very much a love-hate relationship though, they refuse to give her an IEP, and I had to fight tooth and nail for the 504, accomodations for Asperger's and gifted identification.

 

[pipersmom]

Piper started out with a health plan and now has a 504. To handle the homebound aspect, her plans have always had "automatic homebound instruction after ten cumulative (NOT consecutive) days absent". It hasn't been much of an issue for us the past two years though, last year (4th grade) she was on IVs within 3 weeks of school starting and her CF Doc decided to put her on homebound for the rest of the year. (She had a pattern of not being able to be in school more than 3-4 weeks at a time before needing IVs, and the hope was keeping her out of the environment would help.) We actually do her homebound at the school, after school hours- the classroom gets wiped down, and I think it helps both of from going completely crazy since it's just the two of us to begin with and 24/7 of togetherness can get old.

This year she is starting out on homebound and will not be in the classroom at all. She seems to be in a pattern of needing IVs roughly every six weeks, and our clinic does not allow kids to attend elementary while their port is accessed. The interesting thing to me has been that she is learning and excelling with 5 hrs of instruction a week, and maybe another hrs worth of homework. We love that we can tailor her learning to her needs- last year she did 5th grade science as a 4th grader, and this year will do 6th grade science and either history or english. The school proposed a grade skip to 6th, but she has no interest in doing that, and it isn't something I'm willing to push her into. (She also has Asperger's Syndrome).

To cover the social aspects, Piper is allowed to attend school field trips, field days, etc as medically feasible, and also has a lunch group at school once a week, where she invites 5-6 of her friends, and they all have lunch together. She also participates in the talent show, and the school chorus. Last year she also had recorder lessons from the music teacher after school once a week. We've been very lucky, I think, my understanding is that some school systems want a child to literally not be able to leave the house to grant homebound, Piper's school has always had the attitude that they want her to have as much normalcy as possible. It's very much a love-hate relationship though, they refuse to give her an IEP, and I had to fight tooth and nail for the 504, accomodations for Asperger's and gifted identification.