growth hormones vs. g-tube for 13 year old boy

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TonyaH

Guest
<p>Thanks everyone,
<p>Your responses are helping.
<p>Liza, I responded to your pms...thank you SO MUCH!!
<p>Beccamom..Great taste in names! Our Becca is our carrier and is about to turn 9 in May. Thanks for mentioning the ng tube. I agree, I don't see that being practical for every day living at all. I am going to specifically ask the endocrinologist about Andrew's bone age. Would not have known that before now. I'll keep you posted on what I learn.Perhaps we can help each other. (and you are correct..Andrew has been PI since birth.)
<p>
<p>Keith..Andrew is actually better with needles than he is long term tubes..( piccs, ports, etc..) If he were basing his decision on comfort, he would prefer the injections. Your foood allergy comment is a great one. I would not have know to ask the doctor about that unless you told me to. Thank you.
<p>
<p>Jane..You know I will have many questions for you as we go! You were the first person I thought of when we were at the hospital yesterday. With Andrews age and gender, you are my mentor!
<p>
<p>I love this website! This is going to be a difficult decision. My brain tells me it was to be expected and not to over react..all of you have done it, right? But my heart just feels so heavy...I thank you all for being here!
 
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minimedic304

New member
I started my feeding at age 12, and it is very important to have proper calories otherwise he will be very slow to develop at puberty. To be honest, if he is so low in weight and size you should be on both. I am 31 and take growth hormone still do my feedings every night and now also take testosterone gel. This combination has helped me build muscle and gain weight. I wish they had this information and drugs avail when I was 12, I would probably be in a much better position. Growth hormone is proved to help maintain and develop the lungs.
 
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minimedic304

New member
I started my feeding at age 12, and it is very important to have proper calories otherwise he will be very slow to develop at puberty. To be honest, if he is so low in weight and size you should be on both. I am 31 and take growth hormone still do my feedings every night and now also take testosterone gel. This combination has helped me build muscle and gain weight. I wish they had this information and drugs avail when I was 12, I would probably be in a much better position. Growth hormone is proved to help maintain and develop the lungs.
 
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minimedic304

New member
<p>I started my feeding at age 12, and it is very important to have proper calories otherwise he will be very slow to develop at puberty. To be honest, if he is so low in weight and size you should be on both. I am 31 and take growth hormone still do my feedings every night and now also take testosterone gel. This combination has helped me build muscle and gain weight. I wish they had this information and drugs avail when I was 12, I would probably be in a much better position. Growth hormone is proved to help maintain and develop the lungs.
 
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giantsfan91

Guest
I started using HGH when I was about 13 until I was 16 and those years were the healthiest years of my life. Not only did I see a gain in size but my lung health was stable with minimal infections. If I didn't get tired of injecting every night, I'd still be doing them because of how good I felt on them. The HGH isn't an overnight fix though, I didn't see results for at least a year of injecting but I grew a total of 9 inches and gained around 40 lbs total with no extra effort in eating or lifting. I never had a G-tube but I know I would have refused one if they asked.
 
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giantsfan91

Guest
I started using HGH when I was about 13 until I was 16 and those years were the healthiest years of my life. Not only did I see a gain in size but my lung health was stable with minimal infections. If I didn't get tired of injecting every night, I'd still be doing them because of how good I felt on them. The HGH isn't an overnight fix though, I didn't see results for at least a year of injecting but I grew a total of 9 inches and gained around 40 lbs total with no extra effort in eating or lifting. I never had a G-tube but I know I would have refused one if they asked.
 
G

giantsfan91

Guest
I started using HGH when I was about 13 until I was 16 and those years were the healthiest years of my life. Not only did I see a gain in size but my lung health was stable with minimal infections. If I didn't get tired of injecting every night, I'd still be doing them because of how good I felt on them. The HGH isn't an overnight fix though, I didn't see results for at least a year of injecting but I grew a total of 9 inches and gained around 40 lbs total with no extra effort in eating or lifting. I never had a G-tube but I know I would have refused one if they asked.
 
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PatrickM

New member
Hi Tonya,

My son with CF turned 14 in March. In February at what I thought was going to be a routine visit with the nutritionist they told me we should consider a feeding tube. The MD sent us home with a video put out by Cystic Fibrosis Services entitled Tube Feeding and Cystic Fibrosis. It was excellent and if you haven't seen it I highly recommend it. Both my son and I watched it, separately, his choice. The guy in the video that does the NG tube feeding is very strong and handsome. His photos he shows before ng feeding when he was an adolescent reminded me so much of my son. In the video he is early 20's and like I said big, strong and handsome which was good for my son to see how this man benefited from the ng tube. They also show the g tube and how to do feedings in detail for both, and talk about how families made the decision to do tube feeding.

The other thing they started my son on was the appetite stimulant cyproheptadine. I had read very mixed reviews on here so my hopes were not that high for it to work. He ended up putting on 8 lbs in 5 weeks and has since put on 4 more lbs. He was tired when he first started taking it but he got used to it and isn't affected by that anymore. We also focused on all high fat food. All the healthy food I used to buy I skipped and I just let him eat high fat stuff that went against my motherly instincts. I have a family friend with CF who is in her 40's and she told me just go high fat all the way, so we did and for him it worked. He also made a huge effort to eat more because he did not want the feeding tube.

I know this must be a very difficult decision for your family. I also understand how hard it is for these kids just to be teenagers, never mind about all the stuff CF brings with it. I do think for boys when their peers are growing and they are not it effects their self esteem. I think the weight gain you will get with whatever route you choose will ultimately give your son a self esteem boost. Had the appetite stimulant not worked for us I would have tried a feeding tube of some sort. So many people on here say it is a hard decision but one they do not regret. No one gave us the growth hormone option but you can always try. It might be a good place to start?

I wish all of you the best with your decision.

Tara
 
P

PatrickM

New member
Hi Tonya,

My son with CF turned 14 in March. In February at what I thought was going to be a routine visit with the nutritionist they told me we should consider a feeding tube. The MD sent us home with a video put out by Cystic Fibrosis Services entitled Tube Feeding and Cystic Fibrosis. It was excellent and if you haven't seen it I highly recommend it. Both my son and I watched it, separately, his choice. The guy in the video that does the NG tube feeding is very strong and handsome. His photos he shows before ng feeding when he was an adolescent reminded me so much of my son. In the video he is early 20's and like I said big, strong and handsome which was good for my son to see how this man benefited from the ng tube. They also show the g tube and how to do feedings in detail for both, and talk about how families made the decision to do tube feeding.

The other thing they started my son on was the appetite stimulant cyproheptadine. I had read very mixed reviews on here so my hopes were not that high for it to work. He ended up putting on 8 lbs in 5 weeks and has since put on 4 more lbs. He was tired when he first started taking it but he got used to it and isn't affected by that anymore. We also focused on all high fat food. All the healthy food I used to buy I skipped and I just let him eat high fat stuff that went against my motherly instincts. I have a family friend with CF who is in her 40's and she told me just go high fat all the way, so we did and for him it worked. He also made a huge effort to eat more because he did not want the feeding tube.

I know this must be a very difficult decision for your family. I also understand how hard it is for these kids just to be teenagers, never mind about all the stuff CF brings with it. I do think for boys when their peers are growing and they are not it effects their self esteem. I think the weight gain you will get with whatever route you choose will ultimately give your son a self esteem boost. Had the appetite stimulant not worked for us I would have tried a feeding tube of some sort. So many people on here say it is a hard decision but one they do not regret. No one gave us the growth hormone option but you can always try. It might be a good place to start?

I wish all of you the best with your decision.

Tara
 
P

PatrickM

New member
Hi Tonya,
<br />
<br />My son with CF turned 14 in March. In February at what I thought was going to be a routine visit with the nutritionist they told me we should consider a feeding tube. The MD sent us home with a video put out by Cystic Fibrosis Services entitled Tube Feeding and Cystic Fibrosis. It was excellent and if you haven't seen it I highly recommend it. Both my son and I watched it, separately, his choice. The guy in the video that does the NG tube feeding is very strong and handsome. His photos he shows before ng feeding when he was an adolescent reminded me so much of my son. In the video he is early 20's and like I said big, strong and handsome which was good for my son to see how this man benefited from the ng tube. They also show the g tube and how to do feedings in detail for both, and talk about how families made the decision to do tube feeding.
<br />
<br />The other thing they started my son on was the appetite stimulant cyproheptadine. I had read very mixed reviews on here so my hopes were not that high for it to work. He ended up putting on 8 lbs in 5 weeks and has since put on 4 more lbs. He was tired when he first started taking it but he got used to it and isn't affected by that anymore. We also focused on all high fat food. All the healthy food I used to buy I skipped and I just let him eat high fat stuff that went against my motherly instincts. I have a family friend with CF who is in her 40's and she told me just go high fat all the way, so we did and for him it worked. He also made a huge effort to eat more because he did not want the feeding tube.
<br />
<br />I know this must be a very difficult decision for your family. I also understand how hard it is for these kids just to be teenagers, never mind about all the stuff CF brings with it. I do think for boys when their peers are growing and they are not it effects their self esteem. I think the weight gain you will get with whatever route you choose will ultimately give your son a self esteem boost. Had the appetite stimulant not worked for us I would have tried a feeding tube of some sort. So many people on here say it is a hard decision but one they do not regret. No one gave us the growth hormone option but you can always try. It might be a good place to start?
<br />
<br />I wish all of you the best with your decision.
<br />
<br />Tara
 
J

JennyCoulon

New member
My oldest son is 11 years old and has had a g-tube since he was 5. We were very leary about it when it was first mentioned and continued to push it off. Mason then got strep throat and it just wouldn't go away. He didn't have enough reserve to be able to kick it. He finished the school year which had only about 2 weeks and then he was admitted the week after it got out. He did a week's worth of clean-up and then had the g-tube placed. He was very sore and it took some getting used to.
It is now 6 years later and he is doing very well. He has gained to much weight that rather than being in the less than 10% for weight he is now almost to the 50%. He continues even now to have good weight gain.
The major drawback that I see is that he feels that he needs to hide it. He wants to wear a hoodie all of the time even when it is hot. He has the mini so it isn't very big but he is paranoid that someone is going to see it and ask him about it. If I knew of a way for him to get over this I would do it. He is in Middle School and at that age it is tough enough just to fit in without being "different". He has a lot of friends, a couple who know about his button but most do not. He wears a band-aid over it during the day to help conseal it. This is the only drawback that I can see that he has had. I also have a 6 year old with CF and the Dr.'s already started talking about the placement of a g-tube. I know that we will not wait as long as we did with our oldest but we feel he is not ready yet. Let me know if you have any questions that you need answers to.
 
 
J

JennyCoulon

New member
My oldest son is 11 years old and has had a g-tube since he was 5. We were very leary about it when it was first mentioned and continued to push it off. Mason then got strep throat and it just wouldn't go away. He didn't have enough reserve to be able to kick it. He finished the school year which had only about 2 weeks and then he was admitted the week after it got out. He did a week's worth of clean-up and then had the g-tube placed. He was very sore and it took some getting used to.
It is now 6 years later and he is doing very well. He has gained to much weight that rather than being in the less than 10% for weight he is now almost to the 50%. He continues even now to have good weight gain.
The major drawback that I see is that he feels that he needs to hide it. He wants to wear a hoodie all of the time even when it is hot. He has the mini so it isn't very big but he is paranoid that someone is going to see it and ask him about it. If I knew of a way for him to get over this I would do it. He is in Middle School and at that age it is tough enough just to fit in without being "different". He has a lot of friends, a couple who know about his button but most do not. He wears a band-aid over it during the day to help conseal it. Thisis the only drawback that I can see that he has had. I also have a6 year old with CF and theDr.'salready started talkingabout the placement of a g-tube. I know that we will not wait as long as we didwithour oldest but we feel he is not ready yet. Let me know if you have any questions that you need answers to.
 
J

JennyCoulon

New member
<p>My oldest son is 11 years old and has had a g-tube since he was 5. We were very leary about it when it was first mentioned and continued to push it off. Mason then got strep throat and it just wouldn't go away. He didn't have enough reserve to be able to kick it. He finished the school year which had only about 2 weeks and then he was admitted the week after it got out. He did a week's worth of clean-up and then had the g-tube placed. He was very sore and it took some getting used to.
<p>It is now 6 years later and he is doing very well. He has gained to much weight that rather than being in the less than 10% for weight he is now almost to the 50%. He continues even now to have good weight gain.
<p>The major drawback that I see is that he feels that he needs to hide it. He wants to wear a hoodie all of the time even when it is hot. He has the mini so it isn't very big but he is paranoid that someone is going to see it and ask him about it. If I knew of a way for him to get over this I would do it. He is in Middle School and at that age it is tough enough just to fit in without being "different". He has a lot of friends, a couple who know about his button but most do not. He wears a band-aid over it during the day to help conseal it. Thisis the only drawback that I can see that he has had. I also have a6 year old with CF and theDr.'salready started talkingabout the placement of a g-tube. I know that we will not wait as long as we didwithour oldest but we feel he is not ready yet. Let me know if you have any questions that you need answers to.
<p>
 
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