Wanting to know more

A

anonymous

New member
I am a regular on another support board and I don't know if this is the right place to ask this type of question but here it goes...

I am a teacher and am taking additional courses in an effort to better understand the needs of my current and future students. I chose to "write a children's book" on CF as a project for my class. I chose CF because I am a carrier of a "variance" on the gene. This is something that I could pass on to my kids and am interested in learning more.

My project is meant to be a tool for children to better understand the needs, differences, and similarities of some of their potential classmates with CF.

I would greatly appreciate any help/ day to day life examples you could provide!

Thanks so much for the opportunity to post on this board!

LP
 
A

anonymous

New member
I am a regular on another support board and I don't know if this is the right place to ask this type of question but here it goes...

I am a teacher and am taking additional courses in an effort to better understand the needs of my current and future students. I chose to "write a children's book" on CF as a project for my class. I chose CF because I am a carrier of a "variance" on the gene. This is something that I could pass on to my kids and am interested in learning more.

My project is meant to be a tool for children to better understand the needs, differences, and similarities of some of their potential classmates with CF.

I would greatly appreciate any help/ day to day life examples you could provide!

Thanks so much for the opportunity to post on this board!

LP
 
A

anonymous

New member
What is the target age group for your book? Are you looking for daily living activities and such from kids in the books target age group or some information from teens and young adults. if you just look at and read some of the posts on all of the different folders on this website you will see descriptions of daily living activities, the walls that people run into, medications, treatment, common problems in people with CF, diagnostic information, infertility information, how people living with CF feel about themselves, their families, thier future, their childhood...That might be able to assist you in posting some very specific questions foe people to answer and that in combination with interviews and info from past, previous and future posts will help you with your book.

julie
 
A

anonymous

New member
What is the target age group for your book? Are you looking for daily living activities and such from kids in the books target age group or some information from teens and young adults. if you just look at and read some of the posts on all of the different folders on this website you will see descriptions of daily living activities, the walls that people run into, medications, treatment, common problems in people with CF, diagnostic information, infertility information, how people living with CF feel about themselves, their families, thier future, their childhood...That might be able to assist you in posting some very specific questions foe people to answer and that in combination with interviews and info from past, previous and future posts will help you with your book.

julie
 
A

anonymous

New member
Julie, Thanks for replying. I want the "book" to be written from the point of view of a child with a target audience of her peers. This is meant to be informational.

What is it like? What are some limitations, if any? Do you miss a lot of school? I didn't know about the infertility aspect of it. Can you tell me more about this? Can you keep up with homework and active friends?

Thanks!

LP
 
A

anonymous

New member
Julie, Thanks for replying. I want the "book" to be written from the point of view of a child with a target audience of her peers. This is meant to be informational.

What is it like? What are some limitations, if any? Do you miss a lot of school? I didn't know about the infertility aspect of it. Can you tell me more about this? Can you keep up with homework and active friends?

Thanks!

LP
 
A

anonymous

New member
there is a infertility aspect associated with both males and females with CF. There is a great website to check out a lot of information on. I will tell you how to get there. Go to www.cysticfibrosis.com, then in the upper right hand corner click on Links. You will be taken to another page and # 5 or 6 on the page says cystic fibrosis 101. click on that. This is a website by a woman who has cystic fibrosis, and it is by far the most informative website, covering MANY topics that I have ever encountered. You really should take a look, it is laid out very nicely!

male infertility affects 99.5% of males with CF. They have congenital bilateral absence of the Vas Defrens (CBAVD) which is the tube that carries the sperm from production in the epididymus/testicles to ejaculation. There are procedures avilable nowdays such as MESA (a microscopic sperm retrieval from the epididymus), TESA (testicular sperm retrieval), In-vetro fertilization (IVF), Intra cytoplasmic sperm injection (ICSI), that will allow a man with CF to produce a baby that is genetically his, and you can find all of this information by doing searches in any engine using the acyroynms (sp?) listed above.

Female infertility is usually caused by thick secretions in all orfices of the body. Thick secretions/mucous being one of the affects of CF. There is some talk about such simple methods as robitussin being used by females with CF to thin the secretions out, allowing the sperm to reach the egg. Infertility is not as big of an issue with females as with the males. the web link I listed above also discusses this matter in depth.

I will write to you again abou your other questions when I have a little more time. I also want to let you know, I am not the one with CF, my husband has CF and is 24 years old (I am 21). I will ask him some questions about when he was younger, attendance in school when he was younger. I do know that he was very active in soccer and sports until about 17-18, but I will get more specific information from him and get back to you.

Julie
 
A

anonymous

New member
there is a infertility aspect associated with both males and females with CF. There is a great website to check out a lot of information on. I will tell you how to get there. Go to www.cysticfibrosis.com, then in the upper right hand corner click on Links. You will be taken to another page and # 5 or 6 on the page says cystic fibrosis 101. click on that. This is a website by a woman who has cystic fibrosis, and it is by far the most informative website, covering MANY topics that I have ever encountered. You really should take a look, it is laid out very nicely!

male infertility affects 99.5% of males with CF. They have congenital bilateral absence of the Vas Defrens (CBAVD) which is the tube that carries the sperm from production in the epididymus/testicles to ejaculation. There are procedures avilable nowdays such as MESA (a microscopic sperm retrieval from the epididymus), TESA (testicular sperm retrieval), In-vetro fertilization (IVF), Intra cytoplasmic sperm injection (ICSI), that will allow a man with CF to produce a baby that is genetically his, and you can find all of this information by doing searches in any engine using the acyroynms (sp?) listed above.

Female infertility is usually caused by thick secretions in all orfices of the body. Thick secretions/mucous being one of the affects of CF. There is some talk about such simple methods as robitussin being used by females with CF to thin the secretions out, allowing the sperm to reach the egg. Infertility is not as big of an issue with females as with the males. the web link I listed above also discusses this matter in depth.

I will write to you again abou your other questions when I have a little more time. I also want to let you know, I am not the one with CF, my husband has CF and is 24 years old (I am 21). I will ask him some questions about when he was younger, attendance in school when he was younger. I do know that he was very active in soccer and sports until about 17-18, but I will get more specific information from him and get back to you.

Julie
 
A

anonymous

New member
I think one of the most challenging things for you will be the fact that each CF case varies so, so, so much.

Some people with CF have school experiences that are no different from "normal" kids. They play just as much or more sport, didn't have to deal with hospitalisations or time away from school, still have just as much time to do homework. On the other end of the scale, there are children who can't keep up in gym class, have to repeat years due to time away from school, and do so much treatment they don't have time for homework or extra-curricular activities. I guess finding the middle ground is what you'd be aiming for, even though you'd have to somehow get through to the kids [tough audience] that each case of CF is different.

Some of the main things I'd cover are:
- Medications - especially enzymes, which many kids go to the nurse's office to take at school until they're old enough to take them reliably themselves. Also treatments that are mainly done at home on a daily basis even when you're not sick like physio [vest, cpt, flutter, pep etc] and nebulisers.
- Getting "sick" easily - That children with CF catch bugs a lot more easily which results in taking antibiotics or going into hospital. Also "tune-ups" which many children have to do at least once a year throughout school.
- Frequent coughing, that isn't generally contagious! Also possibly needing more bathroom trips, but that can be embarrassing for kids!

Some of the other things you could mention are the other complications that can arise, but probably don't go into detail about them. Sinus problems, diabetes, arthritis, osteoporosis, liver disease. I guess you'd also have to mention infertility, as nearly all men with CF are infertile and women may have problems due to cervical mucus and general issues of well-being throughout pregnancy.

I guess I can't emphasise enough how different CF cases are, so try and get a lot of opinions! See if you can find any children with CF you can "interview" about it <img src="i/expressions/face-icon-small-smile.gif" border="0">

I hope that helps, my personal story about school life probably wouldn't be too helpful as my CF hardly affected me at all except for taking enzymes at school, one sinus operation and asthma-related issues.

Good luck!

Emma (20wcf, Australia)
 
A

anonymous

New member
I think one of the most challenging things for you will be the fact that each CF case varies so, so, so much.

Some people with CF have school experiences that are no different from "normal" kids. They play just as much or more sport, didn't have to deal with hospitalisations or time away from school, still have just as much time to do homework. On the other end of the scale, there are children who can't keep up in gym class, have to repeat years due to time away from school, and do so much treatment they don't have time for homework or extra-curricular activities. I guess finding the middle ground is what you'd be aiming for, even though you'd have to somehow get through to the kids [tough audience] that each case of CF is different.

Some of the main things I'd cover are:
- Medications - especially enzymes, which many kids go to the nurse's office to take at school until they're old enough to take them reliably themselves. Also treatments that are mainly done at home on a daily basis even when you're not sick like physio [vest, cpt, flutter, pep etc] and nebulisers.
- Getting "sick" easily - That children with CF catch bugs a lot more easily which results in taking antibiotics or going into hospital. Also "tune-ups" which many children have to do at least once a year throughout school.
- Frequent coughing, that isn't generally contagious! Also possibly needing more bathroom trips, but that can be embarrassing for kids!

Some of the other things you could mention are the other complications that can arise, but probably don't go into detail about them. Sinus problems, diabetes, arthritis, osteoporosis, liver disease. I guess you'd also have to mention infertility, as nearly all men with CF are infertile and women may have problems due to cervical mucus and general issues of well-being throughout pregnancy.

I guess I can't emphasise enough how different CF cases are, so try and get a lot of opinions! See if you can find any children with CF you can "interview" about it <img src="i/expressions/face-icon-small-smile.gif" border="0">

I hope that helps, my personal story about school life probably wouldn't be too helpful as my CF hardly affected me at all except for taking enzymes at school, one sinus operation and asthma-related issues.

Good luck!

Emma (20wcf, Australia)
 
A

anonymous

New member
Thanks, Julie and Emma! I've been searching the site.

I decided to do an ABC book and am having a difficult time finding CF words for the letters q, x, y, z and a few others!I'll come up with something!

Thanks for all your help!

LP
 
A

anonymous

New member
Thanks, Julie and Emma! I've been searching the site.

I decided to do an ABC book and am having a difficult time finding CF words for the letters q, x, y, z and a few others!I'll come up with something!

Thanks for all your help!

LP
 
E

Emily65Roses

New member
For Z, my first guess would be to try Zithromax. I don't know if you want to include drug names... but that's an antibiotic that many CFers (including myself) take on a reuglar basis (Mon, Wed, Fri) for extended periods of time in order to keep pseudomonas under control.
 
E

Emily65Roses

New member
For Z, my first guess would be to try Zithromax. I don't know if you want to include drug names... but that's an antibiotic that many CFers (including myself) take on a reuglar basis (Mon, Wed, Fri) for extended periods of time in order to keep pseudomonas under control.
 
A

anonymous

New member
Hi LP.
Are you looking for feelings, reactions from children at all? I have a 7 year old boy in second grade who has peers that are afraid they will catch his "cough" disease. We have tried to educate the children with a fundraiser and talk of CF, but children notice something is different and despite how normal we as adults want to make our childrens illness, it is evident to his classmates.
I suspect it is the cough and the need to spit our his sputum, his frequent bathroom priveledges that the others do not get, is this any information you are looking for????
Murgie
 
A

anonymous

New member
Hi LP.
Are you looking for feelings, reactions from children at all? I have a 7 year old boy in second grade who has peers that are afraid they will catch his "cough" disease. We have tried to educate the children with a fundraiser and talk of CF, but children notice something is different and despite how normal we as adults want to make our childrens illness, it is evident to his classmates.
I suspect it is the cough and the need to spit our his sputum, his frequent bathroom priveledges that the others do not get, is this any information you are looking for????
Murgie
 
R

rachelsmom

New member
Hi LP,

My daughter is 8 years old and would love to answer any questions you would have. She has missed a lot of school this year. She was in the hospital for two weeks Aug/Sept and then two more weeks in October. She has a very supportive school and the kids seem to be very protective of her. We have a walkathon every year for Cystic Fibrosis and the school raises money. They get a kick out of helping her. We are very lucky that way. I dont know if it will always be that way especially when she goes to middle school but for now we have a very positive situation. Let me know.

Thanks,

Teri
 
R

rachelsmom

New member
Hi LP,

My daughter is 8 years old and would love to answer any questions you would have. She has missed a lot of school this year. She was in the hospital for two weeks Aug/Sept and then two more weeks in October. She has a very supportive school and the kids seem to be very protective of her. We have a walkathon every year for Cystic Fibrosis and the school raises money. They get a kick out of helping her. We are very lucky that way. I dont know if it will always be that way especially when she goes to middle school but for now we have a very positive situation. Let me know.

Thanks,

Teri
 
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