How do you help them cope?

westonsmom · Jun 10, 2010

I second the notion that CF SUCKS!!! I have no advice except that just be sympathetic and try to explain why in ways that are age appropriate. She's still going to complain and I think we need to let them complain and protest even though it tears out our own hearts! I find it hard to separate my own feelings in times like these. I just hate when my child has to suffer and I also hate some of these things for myself to be perfectly honest. It is a lot (on you and her). (((Hugs)))). I also feel the same way as Katie's mom. It sucks that we can't celebrate height because weight doesn't always come with it. I am having this same battle with Weston. He has grown so much and many people comment on how tall he got, but they also comment on how his butt crack shows all the time and I know that it is because he has lost the width. Hang in there.

mneville · Jun 10, 2010

We have the same issues. Aidan is 5 and beyond smart and opinionated and intense and all of those lovely things! He totally gets that CF is bad and sucks without us ever telling him. One day he was hysterical screaming that he wanted to be normal and was not going to do any more enzymes. (It turns out a friend had asked him if he still had that bad disease) But Aidan knows in the back of his mind that he HAS to do all these things to stay well and will do them but emotionally,, he has severe breakdowns. I try to assure him and do everything they say to do...but sometimes it just hurts like hell.

I just have to believe that he will have the inner strength and alot of support to live a happy life despite the obstacles. He is already showing such greatness in so many ways and I think CF will bring out many more. We can only hope and pray and do everything in our power....good luck, I think we are all in the same boat....

Megan

mneville · Jun 10, 2010

We have the same issues. Aidan is 5 and beyond smart and opinionated and intense and all of those lovely things! He totally gets that CF is bad and sucks without us ever telling him. One day he was hysterical screaming that he wanted to be normal and was not going to do any more enzymes. (It turns out a friend had asked him if he still had that bad disease) But Aidan knows in the back of his mind that he HAS to do all these things to stay well and will do them but emotionally,, he has severe breakdowns. I try to assure him and do everything they say to do...but sometimes it just hurts like hell.

I just have to believe that he will have the inner strength and alot of support to live a happy life despite the obstacles. He is already showing such greatness in so many ways and I think CF will bring out many more. We can only hope and pray and do everything in our power....good luck, I think we are all in the same boat....

Megan

mneville · Jun 10, 2010

We have the same issues. Aidan is 5 and beyond smart and opinionated and intense and all of those lovely things! He totally gets that CF is bad and sucks without us ever telling him. One day he was hysterical screaming that he wanted to be normal and was not going to do any more enzymes. (It turns out a friend had asked him if he still had that bad disease) But Aidan knows in the back of his mind that he HAS to do all these things to stay well and will do them but emotionally,, he has severe breakdowns. I try to assure him and do everything they say to do...but sometimes it just hurts like hell.
 
 I just have to believe that he will have the inner strength and alot of support to live a happy life despite the obstacles. He is already showing such greatness in so many ways and I think CF will bring out many more. We can only hope and pray and do everything in our power....good luck, I think we are all in the same boat....
 
 Megan

JennifersHope · Jun 11, 2010

Ugg what a bad spot to be in. She is so adorable and I think it is so good that she can express how she feels.

I am leary about the whole buying toys bribing your child to do something thing. Thing is these kids are all most likely going to grow up into adults. They need to learn responsiblity. I am not saying be hard on them at all, but bribing them to do things teaches them to be manipulative.

I would tell your daughter that you understand and hear her that she doesn't want to do the tube feedings. I would tell her "mommy wishes you didn't have to do them too!!!" I would let her whine about it a little bit. you can whine with her.... I bet that would make her laugh if you really started to whine...

Then like you said remind her she can still sleep with her brothers and do all the fun things she likes.....

I hope that helps. I personally think you are a great CF mom. I know it tears your heart out to have to have her feel different..

Let us know how it goes..

JennifersHope · Jun 11, 2010

Ugg what a bad spot to be in. She is so adorable and I think it is so good that she can express how she feels.

I am leary about the whole buying toys bribing your child to do something thing. Thing is these kids are all most likely going to grow up into adults. They need to learn responsiblity. I am not saying be hard on them at all, but bribing them to do things teaches them to be manipulative.

I would tell your daughter that you understand and hear her that she doesn't want to do the tube feedings. I would tell her "mommy wishes you didn't have to do them too!!!" I would let her whine about it a little bit. you can whine with her.... I bet that would make her laugh if you really started to whine...

Then like you said remind her she can still sleep with her brothers and do all the fun things she likes.....

I hope that helps. I personally think you are a great CF mom. I know it tears your heart out to have to have her feel different..

Let us know how it goes..

JennifersHope · Jun 11, 2010

Ugg what a bad spot to be in. She is so adorable and I think it is so good that she can express how she feels.
 
 I am leary about the whole buying toys bribing your child to do something thing. Thing is these kids are all most likely going to grow up into adults. They need to learn responsiblity. I am not saying be hard on them at all, but bribing them to do things teaches them to be manipulative.
 
 I would tell your daughter that you understand and hear her that she doesn't want to do the tube feedings. I would tell her "mommy wishes you didn't have to do them too!!!" I would let her whine about it a little bit. you can whine with her.... I bet that would make her laugh if you really started to whine...
 
 Then like you said remind her she can still sleep with her brothers and do all the fun things she likes.....
 
 I hope that helps. I personally think you are a great CF mom. I know it tears your heart out to have to have her feel different..
 
 Let us know how it goes..

Mommafirst · Jun 11, 2010

Thank you all for the support and advice. I did try the whole whine and cry too, thing, and it confused her at first. Then she laughed. I acted it up, but it wasn't hard to shed real tears over this. As I think you all know.

We let her make some of the decisions surrounding everything her tube last night. IV stand or backpack? She chose the stand. Which color coban? The pink with the purple flowers!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> It went okay. We'll continue tonight.

And I'm going to take the advice that we keep consistent. I think the dropping one night at a time made it seem too much like she was controlling when we did or didn't do it. Instead, I'll cut the calories per night instead of cut nights from the week.

Thanks everyone!!!!

Mommafirst · Jun 11, 2010

Thank you all for the support and advice. I did try the whole whine and cry too, thing, and it confused her at first. Then she laughed. I acted it up, but it wasn't hard to shed real tears over this. As I think you all know.

We let her make some of the decisions surrounding everything her tube last night. IV stand or backpack? She chose the stand. Which color coban? The pink with the purple flowers!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> It went okay. We'll continue tonight.

And I'm going to take the advice that we keep consistent. I think the dropping one night at a time made it seem too much like she was controlling when we did or didn't do it. Instead, I'll cut the calories per night instead of cut nights from the week.

Thanks everyone!!!!

Mommafirst · Jun 11, 2010

Thank you all for the support and advice. I did try the whole whine and cry too, thing, and it confused her at first. Then she laughed. I acted it up, but it wasn't hard to shed real tears over this. As I think you all know.
 
 We let her make some of the decisions surrounding everything her tube last night. IV stand or backpack? She chose the stand. Which color coban? The pink with the purple flowers!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> It went okay. We'll continue tonight.
 
 And I'm going to take the advice that we keep consistent. I think the dropping one night at a time made it seem too much like she was controlling when we did or didn't do it. Instead, I'll cut the calories per night instead of cut nights from the week.
 
 Thanks everyone!!!!

izemmom · Jun 12, 2010

I don't know how I missed this for 3 days...

First, a ((((hug)))). This is the hardest part of CF. Trying to heip them cope in a way that sets them up to be confident, mature, emotionally "with it" adults some day, without having them hate us as kids.

Second, I am totally grinning at the "I really not kidding..." SOOOO much like my Emily. I get the "You're not listening" line, too.

Third. It does suck. And the kids know that. But the truth is, some things about life would suck even if they didn't have CF. Like today, when Emily put her quarters in the gum ball machine, and nothing came out. It could have been a melt down, but she looked at me, shrugged and said, "That's ok, I got the ice cream I wanted." It's always a trade off, and she's learned that already.

Alyssa is justifiably upset that a "Freedom" is being taken away. Especially tough since she probably feels that she worked hard to earn it. We definately praise Em for eating well and tie that in to having nights off the tube. She looks forward to those nights because they mean she can get up early and come downstairs on her own, or bunk in with her sister. I"m sure it's a lot like that at your house, too. To have it taken away is like being told you're not doing a good job anymore, and NO ONE likes that.

I try to talk to Emily about CF realted things during calm times. I like to hear in her words WHY she has to do the stuff she does. It's kind of like her, convincing her self that things are necessary. So, sometimes in the car I'll just casually ask, "Do you know why you have to have your tube?" OR whatever. Having her express it gives her ownership, and, I think, makes some of the Sh*t easier to accept.

You've already let her make decisions, and it seems like you're getting to a more calm place with it. Bribery works, too.

You already know that you are a great mom. Remember, we're all in this together!

She'll adapt and adjust just like she did the first time. So will you. ANd you'll get back to the point where you can wean.

izemmom · Jun 12, 2010

I don't know how I missed this for 3 days...

First, a ((((hug)))). This is the hardest part of CF. Trying to heip them cope in a way that sets them up to be confident, mature, emotionally "with it" adults some day, without having them hate us as kids.

Second, I am totally grinning at the "I really not kidding..." SOOOO much like my Emily. I get the "You're not listening" line, too.

Third. It does suck. And the kids know that. But the truth is, some things about life would suck even if they didn't have CF. Like today, when Emily put her quarters in the gum ball machine, and nothing came out. It could have been a melt down, but she looked at me, shrugged and said, "That's ok, I got the ice cream I wanted." It's always a trade off, and she's learned that already.

Alyssa is justifiably upset that a "Freedom" is being taken away. Especially tough since she probably feels that she worked hard to earn it. We definately praise Em for eating well and tie that in to having nights off the tube. She looks forward to those nights because they mean she can get up early and come downstairs on her own, or bunk in with her sister. I"m sure it's a lot like that at your house, too. To have it taken away is like being told you're not doing a good job anymore, and NO ONE likes that.

I try to talk to Emily about CF realted things during calm times. I like to hear in her words WHY she has to do the stuff she does. It's kind of like her, convincing her self that things are necessary. So, sometimes in the car I'll just casually ask, "Do you know why you have to have your tube?" OR whatever. Having her express it gives her ownership, and, I think, makes some of the Sh*t easier to accept.

You've already let her make decisions, and it seems like you're getting to a more calm place with it. Bribery works, too.

You already know that you are a great mom. Remember, we're all in this together!

She'll adapt and adjust just like she did the first time. So will you. ANd you'll get back to the point where you can wean.

izemmom · Jun 12, 2010

I don't know how I missed this for 3 days...
 
 First, a ((((hug)))). This is the hardest part of CF. Trying to heip them cope in a way that sets them up to be confident, mature, emotionally "with it" adults some day, without having them hate us as kids.
 
 Second, I am totally grinning at the "I really not kidding..." SOOOO much like my Emily. I get the "You're not listening" line, too.
 
 Third. It does suck. And the kids know that. But the truth is, some things about life would suck even if they didn't have CF. Like today, when Emily put her quarters in the gum ball machine, and nothing came out. It could have been a melt down, but she looked at me, shrugged and said, "That's ok, I got the ice cream I wanted." It's always a trade off, and she's learned that already.
 
 Alyssa is justifiably upset that a "Freedom" is being taken away. Especially tough since she probably feels that she worked hard to earn it. We definately praise Em for eating well and tie that in to having nights off the tube. She looks forward to those nights because they mean she can get up early and come downstairs on her own, or bunk in with her sister. I"m sure it's a lot like that at your house, too. To have it taken away is like being told you're not doing a good job anymore, and NO ONE likes that.
 
 I try to talk to Emily about CF realted things during calm times. I like to hear in her words WHY she has to do the stuff she does. It's kind of like her, convincing her self that things are necessary. So, sometimes in the car I'll just casually ask, "Do you know why you have to have your tube?" OR whatever. Having her express it gives her ownership, and, I think, makes some of the Sh*t easier to accept.
 
 You've already let her make decisions, and it seems like you're getting to a more calm place with it. Bribery works, too.
 
 You already know that you are a great mom. Remember, we're all in this together!
 
 She'll adapt and adjust just like she did the first time. So will you. ANd you'll get back to the point where you can wean.

Housepharmacy · Jun 17, 2010

Hey Heather,

Well being a father of a 14 year old boy with CF, I can vouch that CF does officially suck! Son is on tube feeds (getting 3 cans of Nutren) a night. Now we do let him off on the weekends (we have to have some sanity) The doctors want him to do his feedings every night, but we come into an agreement and the way I do it is I make it look like its HIS idea to be off on the weekends. He really doesn't realize that I secretly told the doctors about his weekends off and to be honest they were ok with that.

So here is my advise. You have to get her involved a bit. When they are that age, they get told what to do alot and it makes the kids recent treatments and feedings. Since you know your kiddo better than I do, is there a way to make it seem that some of the feedings are her idea, rather than yours or the doctors? Perhaps suggest to her that the doctor wants her really to do 5 feedings, but if she is good about doing them (meaning her willingness) they can go down to 4?

I know it seems a bit weird, but sometimes kids just want to be more in control.

Housepharmacy · Jun 17, 2010

Hey Heather,

Well being a father of a 14 year old boy with CF, I can vouch that CF does officially suck! Son is on tube feeds (getting 3 cans of Nutren) a night. Now we do let him off on the weekends (we have to have some sanity) The doctors want him to do his feedings every night, but we come into an agreement and the way I do it is I make it look like its HIS idea to be off on the weekends. He really doesn't realize that I secretly told the doctors about his weekends off and to be honest they were ok with that.

So here is my advise. You have to get her involved a bit. When they are that age, they get told what to do alot and it makes the kids recent treatments and feedings. Since you know your kiddo better than I do, is there a way to make it seem that some of the feedings are her idea, rather than yours or the doctors? Perhaps suggest to her that the doctor wants her really to do 5 feedings, but if she is good about doing them (meaning her willingness) they can go down to 4?

I know it seems a bit weird, but sometimes kids just want to be more in control.

Housepharmacy · Jun 17, 2010

Hey Heather,
 
 Well being a father of a 14 year old boy with CF, I can vouch that CF does officially suck! Son is on tube feeds (getting 3 cans of Nutren) a night. Now we do let him off on the weekends (we have to have some sanity) The doctors want him to do his feedings every night, but we come into an agreement and the way I do it is I make it look like its HIS idea to be off on the weekends. He really doesn't realize that I secretly told the doctors about his weekends off and to be honest they were ok with that.
 
 So here is my advise. You have to get her involved a bit. When they are that age, they get told what to do alot and it makes the kids recent treatments and feedings. Since you know your kiddo better than I do, is there a way to make it seem that some of the feedings are her idea, rather than yours or the doctors? Perhaps suggest to her that the doctor wants her really to do 5 feedings, but if she is good about doing them (meaning her willingness) they can go down to 4?
 
 I know it seems a bit weird, but sometimes kids just want to be more in control.

cabgodfrey · Jun 18, 2010

Hi Heather,

I have a 12 year old with CF and she has always struggled with weight. We have done everything in the book to keep her weight up and have not needed the feeding tube, praise the LORD! But, I wanted to comment because I think sometimes we just need to hear the right words to help us put life into perspective and in a nutshell, to make us feel better. Your daughter is blessed because she has you. Feeding tubes are not fun, they stink, but oh my gosh, what if you didn't have that option? What if there were no such thing as feeding tubes, what would Alyssa be without them? They are a life saver and I know it's not fun for her, but I do know that it will make her stronger because she has to deal with more than some others. And, you said it yourself, her lungs sound great! So many people wish they could say that, too, but they can't. Your Alyssa has such a great future ahead of her because of all the amazing research being done and the multitude of options now available for CFer's...and kids are going to complain, whether it's a feeding tube or a toy they really want but can't have. I think the one it's bothering the most here is you, because as her momma, you don't want her to have to deal with hard things. And that is so normal. No one does. But you have her, she is with you and alive and doing well. Please, concentrate on that and don't let yourself get down just because she needs help with nutrition. Enjoy every day with her and when you find yourself getting sad or discouraged, let your mind to go the positive things...her lungs, her life and her joy. It never helps to worry and it never helps to feel sorry for her. Be strong for her and she will be strong, too. Hope this helps...

cabgodfrey · Jun 18, 2010

Hi Heather,

I have a 12 year old with CF and she has always struggled with weight. We have done everything in the book to keep her weight up and have not needed the feeding tube, praise the LORD! But, I wanted to comment because I think sometimes we just need to hear the right words to help us put life into perspective and in a nutshell, to make us feel better. Your daughter is blessed because she has you. Feeding tubes are not fun, they stink, but oh my gosh, what if you didn't have that option? What if there were no such thing as feeding tubes, what would Alyssa be without them? They are a life saver and I know it's not fun for her, but I do know that it will make her stronger because she has to deal with more than some others. And, you said it yourself, her lungs sound great! So many people wish they could say that, too, but they can't. Your Alyssa has such a great future ahead of her because of all the amazing research being done and the multitude of options now available for CFer's...and kids are going to complain, whether it's a feeding tube or a toy they really want but can't have. I think the one it's bothering the most here is you, because as her momma, you don't want her to have to deal with hard things. And that is so normal. No one does. But you have her, she is with you and alive and doing well. Please, concentrate on that and don't let yourself get down just because she needs help with nutrition. Enjoy every day with her and when you find yourself getting sad or discouraged, let your mind to go the positive things...her lungs, her life and her joy. It never helps to worry and it never helps to feel sorry for her. Be strong for her and she will be strong, too. Hope this helps...

cabgodfrey · Jun 18, 2010

Hi Heather,
 
 I have a 12 year old with CF and she has always struggled with weight. We have done everything in the book to keep her weight up and have not needed the feeding tube, praise the LORD! But, I wanted to comment because I think sometimes we just need to hear the right words to help us put life into perspective and in a nutshell, to make us feel better. Your daughter is blessed because she has you. Feeding tubes are not fun, they stink, but oh my gosh, what if you didn't have that option? What if there were no such thing as feeding tubes, what would Alyssa be without them? They are a life saver and I know it's not fun for her, but I do know that it will make her stronger because she has to deal with more than some others. And, you said it yourself, her lungs sound great! So many people wish they could say that, too, but they can't. Your Alyssa has such a great future ahead of her because of all the amazing research being done and the multitude of options now available for CFer's...and kids are going to complain, whether it's a feeding tube or a toy they really want but can't have. I think the one it's bothering the most here is you, because as her momma, you don't want her to have to deal with hard things. And that is so normal. No one does. But you have her, she is with you and alive and doing well. Please, concentrate on that and don't let yourself get down just because she needs help with nutrition. Enjoy every day with her and when you find yourself getting sad or discouraged, let your mind to go the positive things...her lungs, her life and her joy. It never helps to worry and it never helps to feel sorry for her. Be strong for her and she will be strong, too. Hope this helps...

LisaGreene · Jun 18, 2010

Hi Heather,
There are already so many good ideas from other parents and you are doing alot right! I love how you were silly with your daughter- humor goes such a long ways. So my post isn't just for you but to all of us in general- including myself (as a mom of 2 kids with CF who is also feeling like CF stinks right now!) ;-)

So- the reality is: CF stinks! And, if we feel that way as parents, it only makes sense that our kids will feel that way, too.

But the way that we respond to our kids in these moments can make a huge difference whether they will come to see themselves as victims of CF or as victors over it.

We all know adults with serious illnesses (including CF) that fall into both sides of the camp- whiners vs. winners. Not to say that we shouldn't whine at times- we all do and certainly deserve to! However, is it the predominant style of coping or just a short, well-needed venting?

The danger is that we, as parents, by our responses, can end up (unintentionally of course) encouraging a victim life stance. There are payoffs in whining and playing the victim: lots of sympathy, people hustling around to make things better, getting out of something distasteful or difficult (like a GI tube), power, control, shows of emotion, attention, etc.

So we, as parents, don't want to respond in ways that give our kids "payoffs" for being a victim. Instead, we want to give them positives for being a victor.

So, the key with our CF kids who are whining about CF or breathing treatments or anything else for that matter (including homework!) is to be empathetic and understanding but not validate the CONTENT of the complaint and bring our kids into the "thinking state."

I have written a whole book about this issue (Parenting Children with Health Issues by Cline/Greene on amazon) so I can't give you a thorough answer in just a short note. But here are some links to good video, audio, etc. which will help give you the communication tools to deal with this effectively.

Free video presentation of "Winning with CF" at AR Children's Hospital Family Ed Day: <a target=_blank class=ftalternatingbarlinklarge href="http://www.happyheartfamilies.citymax.com/WinCFVideo.html">http://www.happyheartfamilies....ax.com/WinCFVideo.html</a>

Free audio download of Top Do's and Don'ts for Raising Kids with Health Issues at Cystic Fibrosis Research Inc conference): <a target=_blank class=ftalternatingbarlinklarge href="http://www.parentingchildrenwithhealthissues.com/AudioDownload.html">http://www.parentingchildrenwi...com/AudioDownload.html</a>

A big piece of this is making sure our kids know the all of the possible consequences for their non-adherence. They can't make good decisions without knowing the truth. Of course how we present that truth is important and here are some articles on how to talk about difficult issues with our CF kids: <a target=_blank class=ftalternatingbarlinklarge href="http://www.happyheartfamilies.citymax.com/CFChildCommunication.html">http://www.happyheartfamilies....hildCommunication.html</a>

Hang in there!! You can do it...
Hugs,
Lisa

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