Taking CF kids to Great Strides

[angelsmom]

This is my second year doing Great Strides. Last year we were new to it so we did not take our daughter with CF. I would like to take her this year and asked our CF doc for her opinion. Her response was that she did not want to comment one way or the other. Big help that was!! She basically said it was up to us to decide.

I am aware of the risks of cross-contamination, which is why I sought our doctor's opinion. I know our walk site has a playground and my 3-year old daughter would likely want to spend most of the time playing there. My concern is that she will encounter other small kids with CF playing there as well and it will be a little difficult to enforce the "3 foot rule." My daughter is very social and will tag along with anyone she meets on the playground. I don't know how many people are expected at our walk nor do I have any idea how many kids with CF will be there. My guess is there may be a few . . . but how will I know? And how will their parents know? Do I go around introducing myself to the people who brought kids and inquire if they have CF? Do I approach the parents and ask that our kids not play together if they both have CF?

So, I'm interested to know if others take their young CF kids to Great Strides?

Thanks for any responses!

 

[angelsmom]

This is my second year doing Great Strides. Last year we were new to it so we did not take our daughter with CF. I would like to take her this year and asked our CF doc for her opinion. Her response was that she did not want to comment one way or the other. Big help that was!! She basically said it was up to us to decide.

I am aware of the risks of cross-contamination, which is why I sought our doctor's opinion. I know our walk site has a playground and my 3-year old daughter would likely want to spend most of the time playing there. My concern is that she will encounter other small kids with CF playing there as well and it will be a little difficult to enforce the "3 foot rule." My daughter is very social and will tag along with anyone she meets on the playground. I don't know how many people are expected at our walk nor do I have any idea how many kids with CF will be there. My guess is there may be a few . . . but how will I know? And how will their parents know? Do I go around introducing myself to the people who brought kids and inquire if they have CF? Do I approach the parents and ask that our kids not play together if they both have CF?

So, I'm interested to know if others take their young CF kids to Great Strides?

Thanks for any responses!

 

[angelsmom]

This is my second year doing Great Strides. Last year we were new to it so we did not take our daughter with CF. I would like to take her this year and asked our CF doc for her opinion. Her response was that she did not want to comment one way or the other. Big help that was!! She basically said it was up to us to decide.

I am aware of the risks of cross-contamination, which is why I sought our doctor's opinion. I know our walk site has a playground and my 3-year old daughter would likely want to spend most of the time playing there. My concern is that she will encounter other small kids with CF playing there as well and it will be a little difficult to enforce the "3 foot rule." My daughter is very social and will tag along with anyone she meets on the playground. I don't know how many people are expected at our walk nor do I have any idea how many kids with CF will be there. My guess is there may be a few . . . but how will I know? And how will their parents know? Do I go around introducing myself to the people who brought kids and inquire if they have CF? Do I approach the parents and ask that our kids not play together if they both have CF?

So, I'm interested to know if others take their young CF kids to Great Strides?

Thanks for any responses!

 

[Ratatosk]

This year we're actually considering not bringing DS along because of the playground issue. First two years he was the only CFer, only child for that matter, playing on the playground equipment. He's enrolled in a park board class which occurs on walk day anyway, so his Grandpa is taking him to that. He could care less about the walk in any event. He'd prefer hanging out at a park, any park and we can do that closer to home.

Last year, he started off on the playground, there was only one other child on it and I knew he didn't have CF and suddenly there were zillions of kids on the playground equipment and I was really uncomfortable. Especially when the clinic dietician made a comment to me about Wow there are a LOT of kids on the playground equipment. Basically kept wiping off ds's hands with antibacterial wipes. We recently had a great strides meeting and someone asked the same exact question and another mom who has a child DS's age said she promised her kids that they'd go to a different playground AFTER the walk, but they couldn't go to this one because of concerns with germs. They ended up not going to any because her kid had toddler meltdown despite promises of finding a different park and proceeded to fall asleep before they reached another playground.

Oh and DS is like your child. Always touching other people -- doing the gotch your nose thing, hugging -- last night he was horrible during his swim class despite talks about keeping his hands to himself. Toddlers... Sigh.

 

[Ratatosk]

This year we're actually considering not bringing DS along because of the playground issue. First two years he was the only CFer, only child for that matter, playing on the playground equipment. He's enrolled in a park board class which occurs on walk day anyway, so his Grandpa is taking him to that. He could care less about the walk in any event. He'd prefer hanging out at a park, any park and we can do that closer to home.

Last year, he started off on the playground, there was only one other child on it and I knew he didn't have CF and suddenly there were zillions of kids on the playground equipment and I was really uncomfortable. Especially when the clinic dietician made a comment to me about Wow there are a LOT of kids on the playground equipment. Basically kept wiping off ds's hands with antibacterial wipes. We recently had a great strides meeting and someone asked the same exact question and another mom who has a child DS's age said she promised her kids that they'd go to a different playground AFTER the walk, but they couldn't go to this one because of concerns with germs. They ended up not going to any because her kid had toddler meltdown despite promises of finding a different park and proceeded to fall asleep before they reached another playground.

Oh and DS is like your child. Always touching other people -- doing the gotch your nose thing, hugging -- last night he was horrible during his swim class despite talks about keeping his hands to himself. Toddlers... Sigh.

 

[Ratatosk]

This year we're actually considering not bringing DS along because of the playground issue. First two years he was the only CFer, only child for that matter, playing on the playground equipment. He's enrolled in a park board class which occurs on walk day anyway, so his Grandpa is taking him to that. He could care less about the walk in any event. He'd prefer hanging out at a park, any park and we can do that closer to home.

Last year, he started off on the playground, there was only one other child on it and I knew he didn't have CF and suddenly there were zillions of kids on the playground equipment and I was really uncomfortable. Especially when the clinic dietician made a comment to me about Wow there are a LOT of kids on the playground equipment. Basically kept wiping off ds's hands with antibacterial wipes. We recently had a great strides meeting and someone asked the same exact question and another mom who has a child DS's age said she promised her kids that they'd go to a different playground AFTER the walk, but they couldn't go to this one because of concerns with germs. They ended up not going to any because her kid had toddler meltdown despite promises of finding a different park and proceeded to fall asleep before they reached another playground.

Oh and DS is like your child. Always touching other people -- doing the gotch your nose thing, hugging -- last night he was horrible during his swim class despite talks about keeping his hands to himself. Toddlers... Sigh.

 

[Mommafirst]

I've been wondering about this too! My daughter's still pretty young and I can keep her in the stroller, but really the walk is during her nap time and its probably silly to bring her. I think that maybe I'll wait a few years until she can understand what the walk is all about.

 

[Mommafirst]

I've been wondering about this too! My daughter's still pretty young and I can keep her in the stroller, but really the walk is during her nap time and its probably silly to bring her. I think that maybe I'll wait a few years until she can understand what the walk is all about.

 

[Mommafirst]

I've been wondering about this too! My daughter's still pretty young and I can keep her in the stroller, but really the walk is during her nap time and its probably silly to bring her. I think that maybe I'll wait a few years until she can understand what the walk is all about.

 

[Emily65Roses]

Really the best way to approach this... if you want to take your daughter, you have to assume you will expose your daughter to other CFers and their bugs. I don't think this is a reason to say "NOPE, NOT GOING!" because socialization with other CFers is important. It is, as your doctor said, your decision. But if you're <b>very</b> against your child being anywhere near another CFer, you're better off just not taking her.

As for my personal opinion... I say take her. I grew up in a CF world where doctors didn't yet know about the cross-contamination rule. I was a CFF poster child for the Connecticut chapter. All my friends when I was little were other CFers, and it was a fantastic experience. I wouldn't give up any of those memories for anything. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Emily65Roses]

Really the best way to approach this... if you want to take your daughter, you have to assume you will expose your daughter to other CFers and their bugs. I don't think this is a reason to say "NOPE, NOT GOING!" because socialization with other CFers is important. It is, as your doctor said, your decision. But if you're <b>very</b> against your child being anywhere near another CFer, you're better off just not taking her.

As for my personal opinion... I say take her. I grew up in a CF world where doctors didn't yet know about the cross-contamination rule. I was a CFF poster child for the Connecticut chapter. All my friends when I was little were other CFers, and it was a fantastic experience. I wouldn't give up any of those memories for anything. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Emily65Roses]

Really the best way to approach this... if you want to take your daughter, you have to assume you will expose your daughter to other CFers and their bugs. I don't think this is a reason to say "NOPE, NOT GOING!" because socialization with other CFers is important. It is, as your doctor said, your decision. But if you're <b>very</b> against your child being anywhere near another CFer, you're better off just not taking her.

As for my personal opinion... I say take her. I grew up in a CF world where doctors didn't yet know about the cross-contamination rule. I was a CFF poster child for the Connecticut chapter. All my friends when I was little were other CFers, and it was a fantastic experience. I wouldn't give up any of those memories for anything. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[LouLou]

Most children at the walk will have cf. There's no way to know who has it and who doesn't. I think you should bring your daughter but not allow her to socialize freely on the playground. One on one communication is okay where you can enforce the 3 ft. rule. My parents raised me that I wasn't to be around other cfers. When I start the walk I make sure to identify the cfers around me in the crowd so that I don't walk directly behind them to catch their germs, etc. and to maintain the 3 ft. rule.

Honestly last year I thought I don't know if I'll ever go to a walk again. The children running around like wild banchees were hard to avoid. Also, I don't shake adults (or childrens) hands at cf events. It's my policy....in fact I think it should be standardized for everyone since that is most often how germs are passed. I managed to piss off one of the organizers when I declined her handshake- People are clueless. Protect your daughter.

Maybe bring her this year and see how tight of a rope you can keep her on. If she doesn't enjoy it, leave her at home next year. Great Strides might seem like fun and games to children but it's a serious event in the money it brings in and is a great opportunity to learn more about her cf. Bringing her will require your undivided attention. You owe it to her. She doesn't know better until you teach her.

 

[LouLou]

Most children at the walk will have cf. There's no way to know who has it and who doesn't. I think you should bring your daughter but not allow her to socialize freely on the playground. One on one communication is okay where you can enforce the 3 ft. rule. My parents raised me that I wasn't to be around other cfers. When I start the walk I make sure to identify the cfers around me in the crowd so that I don't walk directly behind them to catch their germs, etc. and to maintain the 3 ft. rule.

Honestly last year I thought I don't know if I'll ever go to a walk again. The children running around like wild banchees were hard to avoid. Also, I don't shake adults (or childrens) hands at cf events. It's my policy....in fact I think it should be standardized for everyone since that is most often how germs are passed. I managed to piss off one of the organizers when I declined her handshake- People are clueless. Protect your daughter.

Maybe bring her this year and see how tight of a rope you can keep her on. If she doesn't enjoy it, leave her at home next year. Great Strides might seem like fun and games to children but it's a serious event in the money it brings in and is a great opportunity to learn more about her cf. Bringing her will require your undivided attention. You owe it to her. She doesn't know better until you teach her.

 

[LouLou]

Most children at the walk will have cf. There's no way to know who has it and who doesn't. I think you should bring your daughter but not allow her to socialize freely on the playground. One on one communication is okay where you can enforce the 3 ft. rule. My parents raised me that I wasn't to be around other cfers. When I start the walk I make sure to identify the cfers around me in the crowd so that I don't walk directly behind them to catch their germs, etc. and to maintain the 3 ft. rule.

Honestly last year I thought I don't know if I'll ever go to a walk again. The children running around like wild banchees were hard to avoid. Also, I don't shake adults (or childrens) hands at cf events. It's my policy....in fact I think it should be standardized for everyone since that is most often how germs are passed. I managed to piss off one of the organizers when I declined her handshake- People are clueless. Protect your daughter.

Maybe bring her this year and see how tight of a rope you can keep her on. If she doesn't enjoy it, leave her at home next year. Great Strides might seem like fun and games to children but it's a serious event in the money it brings in and is a great opportunity to learn more about her cf. Bringing her will require your undivided attention. You owe it to her. She doesn't know better until you teach her.

 

[ktsmom]

Strange, DH asked this very same question last night. This will be our first Great Strides. I guess I was thinking that we could keep Katy close to us (her cousins will all be there and they'll keep her pretty well occupied). I'm living with rose colored glasses, perhaps?

I know it is senseless to get p*ssed off about this whole concept but I am. For crying out loud we have been slowly working towards the concept of the positives of the whole Great Strides thing - the fund raising, the hope for a cure, etc. Why does everything have to be so freakin' complicated? But if my daughter caught some bug from another cf'er (or vice versa) from attending this event.....

Okay I officially hate cf today.

 

[ktsmom]

Strange, DH asked this very same question last night. This will be our first Great Strides. I guess I was thinking that we could keep Katy close to us (her cousins will all be there and they'll keep her pretty well occupied). I'm living with rose colored glasses, perhaps?

I know it is senseless to get p*ssed off about this whole concept but I am. For crying out loud we have been slowly working towards the concept of the positives of the whole Great Strides thing - the fund raising, the hope for a cure, etc. Why does everything have to be so freakin' complicated? But if my daughter caught some bug from another cf'er (or vice versa) from attending this event.....

Okay I officially hate cf today.

 

[ktsmom]

Strange, DH asked this very same question last night. This will be our first Great Strides. I guess I was thinking that we could keep Katy close to us (her cousins will all be there and they'll keep her pretty well occupied). I'm living with rose colored glasses, perhaps?

I know it is senseless to get p*ssed off about this whole concept but I am. For crying out loud we have been slowly working towards the concept of the positives of the whole Great Strides thing - the fund raising, the hope for a cure, etc. Why does everything have to be so freakin' complicated? But if my daughter caught some bug from another cf'er (or vice versa) from attending this event.....

Okay I officially hate cf today.

 

[Ratatosk]

My problem is that I know DS will want to play on the playground equipment and last year I entrusted DS to my MIL and SIL because I'm on the walk committee with instructions to keep him away from the playground once it became a free-for-all and they didn't. Plus the local CF clinic actually encourages interaction between CFers "not an issue because none of their patients have cepacia" is what one of the doctors told us -- reason we don't go there anymore. So I got doubly nervous when the dietician made the comment about there being a LOT of kids there and she looked worried about it.

I also think about comments Kiwilady made in the adult forum a year or so ago. Prior to her getting cepacia she attended CF events and what sticks with me is her comment about sharing food -- digging into bags of unwrapped candy.... This year we've got donuts, pizza, cookies -- things that aren't individually wrapped. I think about park shelter with limited bathroom facilities -- is everyone washing their hands...?

I am going to feel weird about DS not being there this year. But just think it's probably for the best until he's a little older. We always have a bbq afterwards with friends, family and people from our walk team at our house afterwards. So they'll all get to see DS there.

 

[Ratatosk]

My problem is that I know DS will want to play on the playground equipment and last year I entrusted DS to my MIL and SIL because I'm on the walk committee with instructions to keep him away from the playground once it became a free-for-all and they didn't. Plus the local CF clinic actually encourages interaction between CFers "not an issue because none of their patients have cepacia" is what one of the doctors told us -- reason we don't go there anymore. So I got doubly nervous when the dietician made the comment about there being a LOT of kids there and she looked worried about it.

I also think about comments Kiwilady made in the adult forum a year or so ago. Prior to her getting cepacia she attended CF events and what sticks with me is her comment about sharing food -- digging into bags of unwrapped candy.... This year we've got donuts, pizza, cookies -- things that aren't individually wrapped. I think about park shelter with limited bathroom facilities -- is everyone washing their hands...?

I am going to feel weird about DS not being there this year. But just think it's probably for the best until he's a little older. We always have a bbq afterwards with friends, family and people from our walk team at our house afterwards. So they'll all get to see DS there.