Tube and limitations

jimiv · Dec 14, 2007

Thanks for the replys and suggestions. I have started talking to Parker and encouraging him to ask questions. His early concern is surgery. He does not want surgery whenever possible. I think the only thing he hates worse that surgery is getting any sort of shot or bloodwork. I have been feeling a lot of grief when I look back and some of my frustrations about meals. This came up again when Parker's weight was 58 pounds (BMI 13.5, below first percentile). I am trying to look for as many ideas I can find. I am looking for ways to talk to him about this. I do not know how many kids or teenagers read this forum so I posted the following message on the teen forum.

My son is 9yo and has been dxed with CF since he was 6 months old. His symptoms have not interfered with most of his daily life and that is a big issue for him. He is trying to minimize its impact. He does not want his friends to know he has it and he does not want people to see what medications he has to take with food and such. He will hide his vest when other kids come over. I am becomming more concerned because it looks like he is going to need a feeding tube. I have started to talk about it with him about it so when his mother and I make the decision about when to do this (probably Jan or Feb) he will be somewhat prepared. He wants to do the NG tube rather than a G tube because he does not want surgery. Does anyone have any suggestions or ideas about what I should be talking to him about? His doctor is recommending a G tube and I tend to agree. What would be good ways of convincing him to consider this seriously? Thanks

Jim, father of Parker 9yo w/CF

I look forward to the promise that I find with the feedback from ya'll

Jim father of Parker 9yo w/CF
"Dream big dreams..then out on your overalls"

jimiv · Dec 14, 2007

Thanks for the replys and suggestions. I have started talking to Parker and encouraging him to ask questions. His early concern is surgery. He does not want surgery whenever possible. I think the only thing he hates worse that surgery is getting any sort of shot or bloodwork. I have been feeling a lot of grief when I look back and some of my frustrations about meals. This came up again when Parker's weight was 58 pounds (BMI 13.5, below first percentile). I am trying to look for as many ideas I can find. I am looking for ways to talk to him about this. I do not know how many kids or teenagers read this forum so I posted the following message on the teen forum.

My son is 9yo and has been dxed with CF since he was 6 months old. His symptoms have not interfered with most of his daily life and that is a big issue for him. He is trying to minimize its impact. He does not want his friends to know he has it and he does not want people to see what medications he has to take with food and such. He will hide his vest when other kids come over. I am becomming more concerned because it looks like he is going to need a feeding tube. I have started to talk about it with him about it so when his mother and I make the decision about when to do this (probably Jan or Feb) he will be somewhat prepared. He wants to do the NG tube rather than a G tube because he does not want surgery. Does anyone have any suggestions or ideas about what I should be talking to him about? His doctor is recommending a G tube and I tend to agree. What would be good ways of convincing him to consider this seriously? Thanks

Jim, father of Parker 9yo w/CF

I look forward to the promise that I find with the feedback from ya'll

Jim father of Parker 9yo w/CF
"Dream big dreams..then out on your overalls"

jimiv · Dec 14, 2007

Thanks for the replys and suggestions. I have started talking to Parker and encouraging him to ask questions. His early concern is surgery. He does not want surgery whenever possible. I think the only thing he hates worse that surgery is getting any sort of shot or bloodwork. I have been feeling a lot of grief when I look back and some of my frustrations about meals. This came up again when Parker's weight was 58 pounds (BMI 13.5, below first percentile). I am trying to look for as many ideas I can find. I am looking for ways to talk to him about this. I do not know how many kids or teenagers read this forum so I posted the following message on the teen forum.

My son is 9yo and has been dxed with CF since he was 6 months old. His symptoms have not interfered with most of his daily life and that is a big issue for him. He is trying to minimize its impact. He does not want his friends to know he has it and he does not want people to see what medications he has to take with food and such. He will hide his vest when other kids come over. I am becomming more concerned because it looks like he is going to need a feeding tube. I have started to talk about it with him about it so when his mother and I make the decision about when to do this (probably Jan or Feb) he will be somewhat prepared. He wants to do the NG tube rather than a G tube because he does not want surgery. Does anyone have any suggestions or ideas about what I should be talking to him about? His doctor is recommending a G tube and I tend to agree. What would be good ways of convincing him to consider this seriously? Thanks

Jim, father of Parker 9yo w/CF

I look forward to the promise that I find with the feedback from ya'll

Jim father of Parker 9yo w/CF
"Dream big dreams..then out on your overalls"

jimiv · Dec 14, 2007

Thanks for the replys and suggestions. I have started talking to Parker and encouraging him to ask questions. His early concern is surgery. He does not want surgery whenever possible. I think the only thing he hates worse that surgery is getting any sort of shot or bloodwork. I have been feeling a lot of grief when I look back and some of my frustrations about meals. This came up again when Parker's weight was 58 pounds (BMI 13.5, below first percentile). I am trying to look for as many ideas I can find. I am looking for ways to talk to him about this. I do not know how many kids or teenagers read this forum so I posted the following message on the teen forum.

My son is 9yo and has been dxed with CF since he was 6 months old. His symptoms have not interfered with most of his daily life and that is a big issue for him. He is trying to minimize its impact. He does not want his friends to know he has it and he does not want people to see what medications he has to take with food and such. He will hide his vest when other kids come over. I am becomming more concerned because it looks like he is going to need a feeding tube. I have started to talk about it with him about it so when his mother and I make the decision about when to do this (probably Jan or Feb) he will be somewhat prepared. He wants to do the NG tube rather than a G tube because he does not want surgery. Does anyone have any suggestions or ideas about what I should be talking to him about? His doctor is recommending a G tube and I tend to agree. What would be good ways of convincing him to consider this seriously? Thanks

Jim, father of Parker 9yo w/CF

I look forward to the promise that I find with the feedback from ya'll

Jim father of Parker 9yo w/CF
"Dream big dreams..then out on your overalls"

jimiv · Dec 14, 2007

Thanks for the replys and suggestions. I have started talking to Parker and encouraging him to ask questions. His early concern is surgery. He does not want surgery whenever possible. I think the only thing he hates worse that surgery is getting any sort of shot or bloodwork. I have been feeling a lot of grief when I look back and some of my frustrations about meals. This came up again when Parker's weight was 58 pounds (BMI 13.5, below first percentile). I am trying to look for as many ideas I can find. I am looking for ways to talk to him about this. I do not know how many kids or teenagers read this forum so I posted the following message on the teen forum.

My son is 9yo and has been dxed with CF since he was 6 months old. His symptoms have not interfered with most of his daily life and that is a big issue for him. He is trying to minimize its impact. He does not want his friends to know he has it and he does not want people to see what medications he has to take with food and such. He will hide his vest when other kids come over. I am becomming more concerned because it looks like he is going to need a feeding tube. I have started to talk about it with him about it so when his mother and I make the decision about when to do this (probably Jan or Feb) he will be somewhat prepared. He wants to do the NG tube rather than a G tube because he does not want surgery. Does anyone have any suggestions or ideas about what I should be talking to him about? His doctor is recommending a G tube and I tend to agree. What would be good ways of convincing him to consider this seriously? Thanks

Jim, father of Parker 9yo w/CF

I look forward to the promise that I find with the feedback from ya'll

Jim father of Parker 9yo w/CF
"Dream big dreams..then out on your overalls"

sdelorenzo · Dec 14, 2007

It is a good idea to include him all of the discussions. I can't imagine a 9-yr-old boy or any child who would want to have a g-tube inserted. My daughter was pretty fearful of the idea. What helped my daughter was a family life person at the hospital gave a mini class on g-tubes to show my daughter what it was all about and to help ease her concerns. They had a life size child doll that had a g-tube. It really helped my daughter realize the g-tube was going to be something small on her tummy. My neighbors son also has cf and he is 10. He got a g-tube at the same time as my daughter this year. He has done well with it. If your son wants to try the ng tube first, then let him. It is just a small tube that he will insert in his nose and the swallow it each night. My daughter had it for a few months when she was an infant. I think it is pretty uncomfortable, but it is good to let him choose so he will know exactly what an ng-tube is all about.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · Dec 14, 2007

It is a good idea to include him all of the discussions. I can't imagine a 9-yr-old boy or any child who would want to have a g-tube inserted. My daughter was pretty fearful of the idea. What helped my daughter was a family life person at the hospital gave a mini class on g-tubes to show my daughter what it was all about and to help ease her concerns. They had a life size child doll that had a g-tube. It really helped my daughter realize the g-tube was going to be something small on her tummy. My neighbors son also has cf and he is 10. He got a g-tube at the same time as my daughter this year. He has done well with it. If your son wants to try the ng tube first, then let him. It is just a small tube that he will insert in his nose and the swallow it each night. My daughter had it for a few months when she was an infant. I think it is pretty uncomfortable, but it is good to let him choose so he will know exactly what an ng-tube is all about.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · Dec 14, 2007

It is a good idea to include him all of the discussions. I can't imagine a 9-yr-old boy or any child who would want to have a g-tube inserted. My daughter was pretty fearful of the idea. What helped my daughter was a family life person at the hospital gave a mini class on g-tubes to show my daughter what it was all about and to help ease her concerns. They had a life size child doll that had a g-tube. It really helped my daughter realize the g-tube was going to be something small on her tummy. My neighbors son also has cf and he is 10. He got a g-tube at the same time as my daughter this year. He has done well with it. If your son wants to try the ng tube first, then let him. It is just a small tube that he will insert in his nose and the swallow it each night. My daughter had it for a few months when she was an infant. I think it is pretty uncomfortable, but it is good to let him choose so he will know exactly what an ng-tube is all about.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · Dec 14, 2007

It is a good idea to include him all of the discussions. I can't imagine a 9-yr-old boy or any child who would want to have a g-tube inserted. My daughter was pretty fearful of the idea. What helped my daughter was a family life person at the hospital gave a mini class on g-tubes to show my daughter what it was all about and to help ease her concerns. They had a life size child doll that had a g-tube. It really helped my daughter realize the g-tube was going to be something small on her tummy. My neighbors son also has cf and he is 10. He got a g-tube at the same time as my daughter this year. He has done well with it. If your son wants to try the ng tube first, then let him. It is just a small tube that he will insert in his nose and the swallow it each night. My daughter had it for a few months when she was an infant. I think it is pretty uncomfortable, but it is good to let him choose so he will know exactly what an ng-tube is all about.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · Dec 14, 2007

It is a good idea to include him all of the discussions. I can't imagine a 9-yr-old boy or any child who would want to have a g-tube inserted. My daughter was pretty fearful of the idea. What helped my daughter was a family life person at the hospital gave a mini class on g-tubes to show my daughter what it was all about and to help ease her concerns. They had a life size child doll that had a g-tube. It really helped my daughter realize the g-tube was going to be something small on her tummy. My neighbors son also has cf and he is 10. He got a g-tube at the same time as my daughter this year. He has done well with it. If your son wants to try the ng tube first, then let him. It is just a small tube that he will insert in his nose and the swallow it each night. My daughter had it for a few months when she was an infant. I think it is pretty uncomfortable, but it is good to let him choose so he will know exactly what an ng-tube is all about.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

Jane · Dec 14, 2007

My sons were 9 and 13 when they had their tubes put in. It was a necessary and worth while proceedure for them both. HOWEVER, both boys had emotional issues after the tubes were placed. My 9 yr old became depressed immediately afterwards. Because of his listlessness after the surgery, he developed pneumonia. Counseling and zoloft was very effective in helping his depression.

My older son bounced back right away, but had deeper emotional scars that didn't surface until much later. He was also counseled and medicated for depression.

It wasn't the tubes that caused the problems, in my opinion, it was the circumstances under which they were placed. Without going into the details, the boys were hospitalized for pulmonary issues when the attending CF doctor (the head of the dept, but not our regular CF doc) ordered that the boys have the tubes placed. She told the kids that they were "very sick boys" and their only chance for improvement was to have the tubes placed immediately. We were all emotional wrecks and because of the other things going on, we were not able to prepare the boys as well as we could have. I believe she did this for the good of the kids, but I know it could have been handled in a better way.

OK, the good news:

Both boys are thriving. Both boys swim, play basketball, go to overnight scout camp (with the pump) and wear normal clothing. Their livestyle is not effected by the button or the overnight feeds. Just like everythng else, its become routine. They are both private about the buttons and don't share it with friends, but they are ok with it now.

Sorry this is so long. Please PM me if you have any questions, I wish we had been allowed to research first. Good luck.

Jane · Dec 14, 2007

My sons were 9 and 13 when they had their tubes put in. It was a necessary and worth while proceedure for them both. HOWEVER, both boys had emotional issues after the tubes were placed. My 9 yr old became depressed immediately afterwards. Because of his listlessness after the surgery, he developed pneumonia. Counseling and zoloft was very effective in helping his depression.

My older son bounced back right away, but had deeper emotional scars that didn't surface until much later. He was also counseled and medicated for depression.

It wasn't the tubes that caused the problems, in my opinion, it was the circumstances under which they were placed. Without going into the details, the boys were hospitalized for pulmonary issues when the attending CF doctor (the head of the dept, but not our regular CF doc) ordered that the boys have the tubes placed. She told the kids that they were "very sick boys" and their only chance for improvement was to have the tubes placed immediately. We were all emotional wrecks and because of the other things going on, we were not able to prepare the boys as well as we could have. I believe she did this for the good of the kids, but I know it could have been handled in a better way.

OK, the good news:

Both boys are thriving. Both boys swim, play basketball, go to overnight scout camp (with the pump) and wear normal clothing. Their livestyle is not effected by the button or the overnight feeds. Just like everythng else, its become routine. They are both private about the buttons and don't share it with friends, but they are ok with it now.

Sorry this is so long. Please PM me if you have any questions, I wish we had been allowed to research first. Good luck.

Jane · Dec 14, 2007

My sons were 9 and 13 when they had their tubes put in. It was a necessary and worth while proceedure for them both. HOWEVER, both boys had emotional issues after the tubes were placed. My 9 yr old became depressed immediately afterwards. Because of his listlessness after the surgery, he developed pneumonia. Counseling and zoloft was very effective in helping his depression.

My older son bounced back right away, but had deeper emotional scars that didn't surface until much later. He was also counseled and medicated for depression.

It wasn't the tubes that caused the problems, in my opinion, it was the circumstances under which they were placed. Without going into the details, the boys were hospitalized for pulmonary issues when the attending CF doctor (the head of the dept, but not our regular CF doc) ordered that the boys have the tubes placed. She told the kids that they were "very sick boys" and their only chance for improvement was to have the tubes placed immediately. We were all emotional wrecks and because of the other things going on, we were not able to prepare the boys as well as we could have. I believe she did this for the good of the kids, but I know it could have been handled in a better way.

OK, the good news:

Both boys are thriving. Both boys swim, play basketball, go to overnight scout camp (with the pump) and wear normal clothing. Their livestyle is not effected by the button or the overnight feeds. Just like everythng else, its become routine. They are both private about the buttons and don't share it with friends, but they are ok with it now.

Sorry this is so long. Please PM me if you have any questions, I wish we had been allowed to research first. Good luck.

Jane · Dec 14, 2007

My sons were 9 and 13 when they had their tubes put in. It was a necessary and worth while proceedure for them both. HOWEVER, both boys had emotional issues after the tubes were placed. My 9 yr old became depressed immediately afterwards. Because of his listlessness after the surgery, he developed pneumonia. Counseling and zoloft was very effective in helping his depression.

My older son bounced back right away, but had deeper emotional scars that didn't surface until much later. He was also counseled and medicated for depression.

It wasn't the tubes that caused the problems, in my opinion, it was the circumstances under which they were placed. Without going into the details, the boys were hospitalized for pulmonary issues when the attending CF doctor (the head of the dept, but not our regular CF doc) ordered that the boys have the tubes placed. She told the kids that they were "very sick boys" and their only chance for improvement was to have the tubes placed immediately. We were all emotional wrecks and because of the other things going on, we were not able to prepare the boys as well as we could have. I believe she did this for the good of the kids, but I know it could have been handled in a better way.

OK, the good news:

Both boys are thriving. Both boys swim, play basketball, go to overnight scout camp (with the pump) and wear normal clothing. Their livestyle is not effected by the button or the overnight feeds. Just like everythng else, its become routine. They are both private about the buttons and don't share it with friends, but they are ok with it now.

Sorry this is so long. Please PM me if you have any questions, I wish we had been allowed to research first. Good luck.

Jane · Dec 14, 2007

My sons were 9 and 13 when they had their tubes put in. It was a necessary and worth while proceedure for them both. HOWEVER, both boys had emotional issues after the tubes were placed. My 9 yr old became depressed immediately afterwards. Because of his listlessness after the surgery, he developed pneumonia. Counseling and zoloft was very effective in helping his depression.

My older son bounced back right away, but had deeper emotional scars that didn't surface until much later. He was also counseled and medicated for depression.

It wasn't the tubes that caused the problems, in my opinion, it was the circumstances under which they were placed. Without going into the details, the boys were hospitalized for pulmonary issues when the attending CF doctor (the head of the dept, but not our regular CF doc) ordered that the boys have the tubes placed. She told the kids that they were "very sick boys" and their only chance for improvement was to have the tubes placed immediately. We were all emotional wrecks and because of the other things going on, we were not able to prepare the boys as well as we could have. I believe she did this for the good of the kids, but I know it could have been handled in a better way.

OK, the good news:

Both boys are thriving. Both boys swim, play basketball, go to overnight scout camp (with the pump) and wear normal clothing. Their livestyle is not effected by the button or the overnight feeds. Just like everythng else, its become routine. They are both private about the buttons and don't share it with friends, but they are ok with it now.

Sorry this is so long. Please PM me if you have any questions, I wish we had been allowed to research first. Good luck.

jimiv · Dec 14, 2007

Thank you all for the support. I started lurking about 10 days ago and posting 5 days ago. I think that since Parker has not had many health problems other than his weight that I have allowed myself to put my head in the sand for a while. This experience has pulled it out once again. Thanks

Jim, father of Parker 9yo w/CF

jimiv · Dec 14, 2007

Thank you all for the support. I started lurking about 10 days ago and posting 5 days ago. I think that since Parker has not had many health problems other than his weight that I have allowed myself to put my head in the sand for a while. This experience has pulled it out once again. Thanks

Jim, father of Parker 9yo w/CF

jimiv · Dec 14, 2007

Thank you all for the support. I started lurking about 10 days ago and posting 5 days ago. I think that since Parker has not had many health problems other than his weight that I have allowed myself to put my head in the sand for a while. This experience has pulled it out once again. Thanks

Jim, father of Parker 9yo w/CF

jimiv · Dec 14, 2007

Thank you all for the support. I started lurking about 10 days ago and posting 5 days ago. I think that since Parker has not had many health problems other than his weight that I have allowed myself to put my head in the sand for a while. This experience has pulled it out once again. Thanks

Jim, father of Parker 9yo w/CF

jimiv · Dec 14, 2007

Thank you all for the support. I started lurking about 10 days ago and posting 5 days ago. I think that since Parker has not had many health problems other than his weight that I have allowed myself to put my head in the sand for a while. This experience has pulled it out once again. Thanks

Jim, father of Parker 9yo w/CF

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