My soon-to-be step-child has CF. I want to know more about CF and ways to care, cook, etc for her....She is 8 and I also have 2 girls of my own ages 4 and 7. Any tips and ideas to help me and my girls understand her diagnosis better. I am learning more and more but I would like to connect with people who have been there/done that!
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My soon-to-be step-child has CF
- Thread starter SunnyK
- Start date
My soon-to-be step-child has CF. I want to know more about CF and ways to care, cook, etc for her....She is 8 and I also have 2 girls of my own ages 4 and 7. Any tips and ideas to help me and my girls understand her diagnosis better. I am learning more and more but I would like to connect with people who have been there/done that!
My soon-to-be step-child has CF. I want to know more about CF and ways to care, cook, etc for her....She is 8 and I also have 2 girls of my own ages 4 and 7. Any tips and ideas to help me and my girls understand her diagnosis better. I am learning more and more but I would like to connect with people who have been there/done that! <BR>
DS is 8 and an only child. He's pancreatic insufficient -- needs digestive enzymes and a bit of a picky eater, but basically eats what we do but with added salt and fat. At home with meals drinks carnation instant breakfast made with whole milk and cream. I know a friend of mine has to maintain a balance between her cf child needing extra calories and fat, vs. her non-cf child who doesn't and tends to over eat.
We do make sure that anyone in close contact with DS gets their flu shots each year -- grandparents, cousins, aunts, uncles, parents & caregivers. So if you and your daughters have never gotten flu shots before, you may want to give that serious consideration.
DS does vest and neb treatments 2-3 times a day, which means he gets to spend that time watching whatever he wants on tv/dvd or playing video games. It's HIS time since he has to sit there for 30-45 minutes plus at a time.
There may be bathroom issues. DS is ooooh so proud of his ability to pass gas and make deposits in the bathroom; however, girls are most likely VERY self conscious about this. Should be made embarrassed about possible accidents, smells...
Otherwise he's a normal child, normal activities, but just needs some extra things -- medications, treatments to keep him happy and healthy.
We do make sure that anyone in close contact with DS gets their flu shots each year -- grandparents, cousins, aunts, uncles, parents & caregivers. So if you and your daughters have never gotten flu shots before, you may want to give that serious consideration.
DS does vest and neb treatments 2-3 times a day, which means he gets to spend that time watching whatever he wants on tv/dvd or playing video games. It's HIS time since he has to sit there for 30-45 minutes plus at a time.
There may be bathroom issues. DS is ooooh so proud of his ability to pass gas and make deposits in the bathroom; however, girls are most likely VERY self conscious about this. Should be made embarrassed about possible accidents, smells...
Otherwise he's a normal child, normal activities, but just needs some extra things -- medications, treatments to keep him happy and healthy.
DS is 8 and an only child. He's pancreatic insufficient -- needs digestive enzymes and a bit of a picky eater, but basically eats what we do but with added salt and fat. At home with meals drinks carnation instant breakfast made with whole milk and cream. I know a friend of mine has to maintain a balance between her cf child needing extra calories and fat, vs. her non-cf child who doesn't and tends to over eat.
We do make sure that anyone in close contact with DS gets their flu shots each year -- grandparents, cousins, aunts, uncles, parents & caregivers. So if you and your daughters have never gotten flu shots before, you may want to give that serious consideration.
DS does vest and neb treatments 2-3 times a day, which means he gets to spend that time watching whatever he wants on tv/dvd or playing video games. It's HIS time since he has to sit there for 30-45 minutes plus at a time.
There may be bathroom issues. DS is ooooh so proud of his ability to pass gas and make deposits in the bathroom; however, girls are most likely VERY self conscious about this. Should be made embarrassed about possible accidents, smells...
Otherwise he's a normal child, normal activities, but just needs some extra things -- medications, treatments to keep him happy and healthy.
We do make sure that anyone in close contact with DS gets their flu shots each year -- grandparents, cousins, aunts, uncles, parents & caregivers. So if you and your daughters have never gotten flu shots before, you may want to give that serious consideration.
DS does vest and neb treatments 2-3 times a day, which means he gets to spend that time watching whatever he wants on tv/dvd or playing video games. It's HIS time since he has to sit there for 30-45 minutes plus at a time.
There may be bathroom issues. DS is ooooh so proud of his ability to pass gas and make deposits in the bathroom; however, girls are most likely VERY self conscious about this. Should be made embarrassed about possible accidents, smells...
Otherwise he's a normal child, normal activities, but just needs some extra things -- medications, treatments to keep him happy and healthy.
DS is 8 and an only child. He's pancreatic insufficient -- needs digestive enzymes and a bit of a picky eater, but basically eats what we do but with added salt and fat. At home with meals drinks carnation instant breakfast made with whole milk and cream. I know a friend of mine has to maintain a balance between her cf child needing extra calories and fat, vs. her non-cf child who doesn't and tends to over eat.
<br />
<br />We do make sure that anyone in close contact with DS gets their flu shots each year -- grandparents, cousins, aunts, uncles, parents & caregivers. So if you and your daughters have never gotten flu shots before, you may want to give that serious consideration.
<br />
<br />
<br />DS does vest and neb treatments 2-3 times a day, which means he gets to spend that time watching whatever he wants on tv/dvd or playing video games. It's HIS time since he has to sit there for 30-45 minutes plus at a time.
<br />
<br />There may be bathroom issues. DS is ooooh so proud of his ability to pass gas and make deposits in the bathroom; however, girls are most likely VERY self conscious about this. Should be made embarrassed about possible accidents, smells...
<br />
<br />Otherwise he's a normal child, normal activities, but just needs some extra things -- medications, treatments to keep him happy and healthy.
<br />
<br />We do make sure that anyone in close contact with DS gets their flu shots each year -- grandparents, cousins, aunts, uncles, parents & caregivers. So if you and your daughters have never gotten flu shots before, you may want to give that serious consideration.
<br />
<br />
<br />DS does vest and neb treatments 2-3 times a day, which means he gets to spend that time watching whatever he wants on tv/dvd or playing video games. It's HIS time since he has to sit there for 30-45 minutes plus at a time.
<br />
<br />There may be bathroom issues. DS is ooooh so proud of his ability to pass gas and make deposits in the bathroom; however, girls are most likely VERY self conscious about this. Should be made embarrassed about possible accidents, smells...
<br />
<br />Otherwise he's a normal child, normal activities, but just needs some extra things -- medications, treatments to keep him happy and healthy.
Hi Sunny:
First CF is not one disease, it depends on the combination of the 2 genes that she has inherited. You need to consult with her CF Clinic. My lung function is pretty good (75%) but i cant eat a cherry without an enzyme. Others will have a lung function in the 40% but can eat anything.
I really respect your interest. Private message me any time.
Bill
First CF is not one disease, it depends on the combination of the 2 genes that she has inherited. You need to consult with her CF Clinic. My lung function is pretty good (75%) but i cant eat a cherry without an enzyme. Others will have a lung function in the 40% but can eat anything.
I really respect your interest. Private message me any time.
Bill
Hi Sunny:
First CF is not one disease, it depends on the combination of the 2 genes that she has inherited. You need to consult with her CF Clinic. My lung function is pretty good (75%) but i cant eat a cherry without an enzyme. Others will have a lung function in the 40% but can eat anything.
I really respect your interest. Private message me any time.
Bill
First CF is not one disease, it depends on the combination of the 2 genes that she has inherited. You need to consult with her CF Clinic. My lung function is pretty good (75%) but i cant eat a cherry without an enzyme. Others will have a lung function in the 40% but can eat anything.
I really respect your interest. Private message me any time.
Bill
Hi Sunny:
<br />
<br />First CF is not one disease, it depends on the combination of the 2 genes that she has inherited. You need to consult with her CF Clinic. My lung function is pretty good (75%) but i cant eat a cherry without an enzyme. Others will have a lung function in the 40% but can eat anything.
<br />
<br />I really respect your interest. Private message me any time.
<br />
<br />Bill
<br />
<br />First CF is not one disease, it depends on the combination of the 2 genes that she has inherited. You need to consult with her CF Clinic. My lung function is pretty good (75%) but i cant eat a cherry without an enzyme. Others will have a lung function in the 40% but can eat anything.
<br />
<br />I really respect your interest. Private message me any time.
<br />
<br />Bill
You sound like you will be a great step parent. CF is tough. Treatments are at least twice a day and we let our daughter choose what she wants to do during that time. it's usually watch a DVD, but she also likes to play playdoh or little people - she's 2 1/2. <br>The biggest concern is keeping sick people away from her. We are very protective when it comes to that and have had to grow a thick skin in order to make sure she stays healthy. Can't worry about people's feelings. Most people understand, but there are some that just don't get it. It's very frustrating.<br>Sometimes she hates to do her treatments. I always try to stay calm and just distract her. I either start a DVD before putting the vest on her so that she is in the "tv zone" or talk about what fun we will have or food we will eat after the vest is done. I tell her that just like she brushes her teeth and eats breakfast everyday, she does the vest too. i'm sure it will be harder as she gets older.<br>We never eat in front of Maggie unless she is able to have enzymes right then and there. There is a limit to how many she can take in a day so we have to space her meals and snacks. She can't snack like I do - which is constantly. And I think it's mean to eat a cookie or go to a drive-thru in front of her if she can't have one in that exact moment. Especially when it's about to be time for the Vest since she can't eat within a half hour of the Vest.<br>Exercise is very important for people with CF. those who exercise regularly were found to live 8x longer than those who don't. So, it needs to be a family affair. hiking, biking, walking - whatever you want to do together.<br>It is also important to always be optimistic. Those with optimism and hope tend to grow up to take better care of themselves and do their treatments which will keep them alive longer! until there is cure!<br>Please ask any questions you want to and I hope I can answer them. (I'm still a bit new at this too)<br>
You sound like you will be a great step parent. CF is tough. Treatments are at least twice a day and we let our daughter choose what she wants to do during that time. it's usually watch a DVD, but she also likes to play playdoh or little people - she's 2 1/2. <br>The biggest concern is keeping sick people away from her. We are very protective when it comes to that and have had to grow a thick skin in order to make sure she stays healthy. Can't worry about people's feelings. Most people understand, but there are some that just don't get it. It's very frustrating.<br>Sometimes she hates to do her treatments. I always try to stay calm and just distract her. I either start a DVD before putting the vest on her so that she is in the "tv zone" or talk about what fun we will have or food we will eat after the vest is done. I tell her that just like she brushes her teeth and eats breakfast everyday, she does the vest too. i'm sure it will be harder as she gets older.<br>We never eat in front of Maggie unless she is able to have enzymes right then and there. There is a limit to how many she can take in a day so we have to space her meals and snacks. She can't snack like I do - which is constantly. And I think it's mean to eat a cookie or go to a drive-thru in front of her if she can't have one in that exact moment. Especially when it's about to be time for the Vest since she can't eat within a half hour of the Vest.<br>Exercise is very important for people with CF. those who exercise regularly were found to live 8x longer than those who don't. So, it needs to be a family affair. hiking, biking, walking - whatever you want to do together.<br>It is also important to always be optimistic. Those with optimism and hope tend to grow up to take better care of themselves and do their treatments which will keep them alive longer! until there is cure!<br>Please ask any questions you want to and I hope I can answer them. (I'm still a bit new at this too)<br>
You sound like you will be a great step parent. CF is tough. Treatments are at least twice a day and we let our daughter choose what she wants to do during that time. it's usually watch a DVD, but she also likes to play playdoh or little people - she's 2 1/2. <br>The biggest concern is keeping sick people away from her. We are very protective when it comes to that and have had to grow a thick skin in order to make sure she stays healthy. Can't worry about people's feelings. Most people understand, but there are some that just don't get it. It's very frustrating.<br>Sometimes she hates to do her treatments. I always try to stay calm and just distract her. I either start a DVD before putting the vest on her so that she is in the "tv zone" or talk about what fun we will have or food we will eat after the vest is done. I tell her that just like she brushes her teeth and eats breakfast everyday, she does the vest too. i'm sure it will be harder as she gets older.<br>We never eat in front of Maggie unless she is able to have enzymes right then and there. There is a limit to how many she can take in a day so we have to space her meals and snacks. She can't snack like I do - which is constantly. And I think it's mean to eat a cookie or go to a drive-thru in front of her if she can't have one in that exact moment. Especially when it's about to be time for the Vest since she can't eat within a half hour of the Vest.<br>Exercise is very important for people with CF. those who exercise regularly were found to live 8x longer than those who don't. So, it needs to be a family affair. hiking, biking, walking - whatever you want to do together.<br>It is also important to always be optimistic. Those with optimism and hope tend to grow up to take better care of themselves and do their treatments which will keep them alive longer! until there is cure!<br>Please ask any questions you want to and I hope I can answer them. (I'm still a bit new at this too)<br>
Congratulations on your expanded family and kudos to you for not being scared away by CF.<br><br>We have an 8 month old with CF, so we're still very new to this. My experience is that every child is different and the way this disease presents itself in every child is different - regardless of the mutations. <br><br>The greatest advice I've received since becoming a CF mom is to not let CF take over your life. Don't let you child or yourself/family become defined by it. I fell into that trap in the early months of his diagnosis, but in the last 2 months or so, we've really started to live our lives again, instead of CF driving everything we do.<br><br>The CF community is wonderfully forthcoming and everyone is happy to help out. I encourage you to go with her to her clinic appointments so you can have a better understanding of the hows/whys of her particular treatment plan. Take your girls too, if you can, as many of the clinics have age specific information to help siblings understand what's going on & why.<br><br>I'm sure you already know this, but hand-sanitizer & good hand washing are now your best friends. It will be especially important for your girls to understand how important it is for them to wash their hands. Little kids are germ factories and what doesn't make them sick can really do a number on CFers.<br><br>Good luck & given your interest, she's a lucky little girl to have you as a step-mom!<br>
Congratulations on your expanded family and kudos to you for not being scared away by CF.<br><br>We have an 8 month old with CF, so we're still very new to this. My experience is that every child is different and the way this disease presents itself in every child is different - regardless of the mutations. <br><br>The greatest advice I've received since becoming a CF mom is to not let CF take over your life. Don't let you child or yourself/family become defined by it. I fell into that trap in the early months of his diagnosis, but in the last 2 months or so, we've really started to live our lives again, instead of CF driving everything we do.<br><br>The CF community is wonderfully forthcoming and everyone is happy to help out. I encourage you to go with her to her clinic appointments so you can have a better understanding of the hows/whys of her particular treatment plan. Take your girls too, if you can, as many of the clinics have age specific information to help siblings understand what's going on & why.<br><br>I'm sure you already know this, but hand-sanitizer & good hand washing are now your best friends. It will be especially important for your girls to understand how important it is for them to wash their hands. Little kids are germ factories and what doesn't make them sick can really do a number on CFers.<br><br>Good luck & given your interest, she's a lucky little girl to have you as a step-mom!<br>