Those of you with older boys. I'm wondering if any of you have been faced with having to get a feeding tube. My son has gotten very thin and most likely will need to get one if he isin't able to add some weight on his own. I'm really scared for him to have this but I'm trying to face reality. We are given so many challenges with this disease but we somehow get through them. If you know anything about this could you please fill me in? Thank you!

Views: 131

Reply to This

Replies to This Discussion

My son Patrick got a feeding tube when he was 17. He had gotten down to 75 lbs and just couldn't eat enough to put on weight. We started with just using it for nighttime feeding. He is 20 now and due to issues with aspiration pnuemonia uses it for continuous feeding. He weighs 95 lbs and looks great.
I was terrified to have him get a feeding tube too. I am so happy we did. He looks great and has plentyof energy. He is now going to college part-time.
Laurie,
I am a big proponent of feeding tubes, I thnk alot of young men with DMD have a very hard time taking in the calories and getting the nutrion that they need without one. My son has had a feeding tube for many years and it has made a huge difference in his life (for the better). If your son is having as much trouble as you say I would not hesitate to get a tube placed as soon as possible. I would be happy to talk to you more about this privately via email if you are interested.
Katherine
My son Justinis only 13, but he has had a feeding tube for a little over 5yrs now. Justin just stopped eating and at 7yrs old dropped down to less than 30lbs. We used his tube for a long time doing continuous feeds, but eventually he started eating on his own again. We never had the tube permanently removed because Justin has a very hard time staying hydrated. We use the tube when he is sick and during the hot months to keep him hydrated. The tube is wonderful. We have had a few minor issues, granualtion tissue, a pseudomans infection, some leakage and irritatio, etc, but we have resolved them quickly. Justin started with a Bard button, but about two years ago, we switched over to a mic-key that we change out ourselves ever so often.

--Samantha
Thank you so much for your words of wisdom. My son is very much against getting a tube. The gastroenterologist that he seen 6 mos. ago said then that he would need to see my son again if dropped into the 80 lb area. We are there! My son wants to try this week again to gain some weight. We made a deal that we would give him this week and if not we will take him in and discuss it more seriously with the Dr. Thanks again and thanks for offering to visit by email. I appreciate that very much.
Katherine M. Reynoldson said:
Laurie,
I am a big proponent of feeding tubes, I thnk alot of young men with DMD have a very hard time taking in the calories and getting the nutrion that they need without one. My son has had a feeding tube for many years and it has made a huge difference in his life (for the better). If your son is having as much trouble as you say I would not hesitate to get a tube placed as soon as possible. I would be happy to talk to you more about this privately via email if you are interested.
Katherine
Thank you everyone for the information you offered. We are giving Gustin a chance to see how it goes this week. I know that we are to the point of needing the tube it 's just getting him to accept it. He has always been very shy and has always wanted to look and be as normal as everyone else. He doesn't like to draw attention to himself at all, so the feeding tube is just another thing he doesn't want to do. I have been reassuring him that no one will see it and that he will get used to it. He really hates talking about it and I think is really denying that there is a problem. It has put a strain on both of us since he doesn't like to talk about it. We will figure it out though, we always do:)
I have spoken with several families over the years and I can't emphasize enough how important good nutrition is for this group of boys and young men. The procedure itself is very, very quick and there really is nothing that will be visible. Having the feeding tube would really take the pressure off of everyone with respect to your son being able to eat enough during the day. When my son first got his feeding tube we ran the pump at night which then left him free to eat as much or as little as he felt he could during the day. You will be amazed at how many calories you can get in during the course of the night. His friends would never know. There are so many options, you can use a pump at night, you can bolus feed (if your son tolerates that), you can do a combination. I would not wait too long, the body needs nutrition to function at its best, your son will start to feel better and have more energy, etc. I could go on and on... I really believe in this intervention. I realize it is a change and change is difficult but in the end you will have greater peace of mind and your son will be in much better health. Please let me know if I can answer any questions.

Laurie Hoovestol said:
Thank you so much for your words of wisdom. My son is very much against getting a tube. The gastroenterologist that he seen 6 mos. ago said then that he would need to see my son again if dropped into the 80 lb area. We are there! My son wants to try this week again to gain some weight. We made a deal that we would give him this week and if not we will take him in and discuss it more seriously with the Dr. Thanks again and thanks for offering to visit by email. I appreciate that very much.
Katherine M. Reynoldson said:
Laurie,
I am a big proponent of feeding tubes, I thnk alot of young men with DMD have a very hard time taking in the calories and getting the nutrion that they need without one. My son has had a feeding tube for many years and it has made a huge difference in his life (for the better). If your son is having as much trouble as you say I would not hesitate to get a tube placed as soon as possible. I would be happy to talk to you more about this privately via email if you are interested.
Katherine
One more thing, Three weeks ago he got a headache, a bad one! He stayed in bed all day and was throwing up all day. By seven that night he was completley fine. Today he woke up with the same headache and it's following the same pattern. Do you think that his nutrition may have alot to do with it? He ate and drank well the day before both of these instances so I don't know. I know that dehydration can do that to but I dont think that is the case either. I wanted him to go to the dr today but of course he is against it. When he was younger we made decisions that we thought were in his best interest which I think they were. The last couple years we have tried to have him make some adult decisions himself but now I feel like I need to make these medical decisions for him!!! It is very scary at this point. I've made appointments for the gastroenterologist and his lung dr which he is due to go in and see. Thanks for your help!

Katherine M. Reynoldson said:
I have spoken with several families over the years and I can't emphasize enough how important good nutrition is for this group of boys and young men. The procedure itself is very, very quick and there really is nothing that will be visible. Having the feeding tube would really take the pressure off of everyone with respect to your son being able to eat enough during the day. When my son first got his feeding tube we ran the pump at night which then left him free to eat as much or as little as he felt he could during the day. You will be amazed at how many calories you can get in during the course of the night. His friends would never know. There are so many options, you can use a pump at night, you can bolus feed (if your son tolerates that), you can do a combination. I would not wait too long, the body needs nutrition to function at its best, your son will start to feel better and have more energy, etc. I could go on and on... I really believe in this intervention. I realize it is a change and change is difficult but in the end you will have greater peace of mind and your son will be in much better health. Please let me know if I can answer any questions.

Laurie Hoovestol said:
Thank you so much for your words of wisdom. My son is very much against getting a tube. The gastroenterologist that he seen 6 mos. ago said then that he would need to see my son again if dropped into the 80 lb area. We are there! My son wants to try this week again to gain some weight. We made a deal that we would give him this week and if not we will take him in and discuss it more seriously with the Dr. Thanks again and thanks for offering to visit by email. I appreciate that very much.
Katherine M. Reynoldson said:
Laurie,
I am a big proponent of feeding tubes, I thnk alot of young men with DMD have a very hard time taking in the calories and getting the nutrion that they need without one. My son has had a feeding tube for many years and it has made a huge difference in his life (for the better). If your son is having as much trouble as you say I would not hesitate to get a tube placed as soon as possible. I would be happy to talk to you more about this privately via email if you are interested.
Katherine
Hi Laurie,
I don't know if your son uses nocturnal (nightime) non-invasive ventilation or not but if not that is definitely something to consider with your Pulmonologist. There are standards of care for DMD as it relates to Pulmonology that you can provide to your son's doctor if he is not up to speed on the topic. Sometimes headaches, difficulty falling asleep, staying asleep, nightmares etc. can be signs of inadequate night time ventilation. You might also consider potential cardio issues. Nutritional status most definitely could also be a factor. It is really hard to say until you address the various body systems and determine if there are issues that need to be addressed. We try very hard to involve our son in the medical decisions that need to be made but sometimes a litle prod in the right direction is necessary. It is definitely something I think all families struggle with as their son(s) get older. Please don't let fear stand in the way of getting the care your son needs. I am glad you are taking him in the GI and Pulmonary docs, best of luck, let me know how I can support you.
Katherine

Laurie Hoovestol said:
One more thing, Three weeks ago he got a headache, a bad one! He stayed in bed all day and was throwing up all day. By seven that night he was completley fine. Today he woke up with the same headache and it's following the same pattern. Do you think that his nutrition may have alot to do with it? He ate and drank well the day before both of these instances so I don't know. I know that dehydration can do that to but I dont think that is the case either. I wanted him to go to the dr today but of course he is against it. When he was younger we made decisions that we thought were in his best interest which I think they were. The last couple years we have tried to have him make some adult decisions himself but now I feel like I need to make these medical decisions for him!!! It is very scary at this point. I've made appointments for the gastroenterologist and his lung dr which he is due to go in and see. Thanks for your help!

Katherine M. Reynoldson said:
I have spoken with several families over the years and I can't emphasize enough how important good nutrition is for this group of boys and young men. The procedure itself is very, very quick and there really is nothing that will be visible. Having the feeding tube would really take the pressure off of everyone with respect to your son being able to eat enough during the day. When my son first got his feeding tube we ran the pump at night which then left him free to eat as much or as little as he felt he could during the day. You will be amazed at how many calories you can get in during the course of the night. His friends would never know. There are so many options, you can use a pump at night, you can bolus feed (if your son tolerates that), you can do a combination. I would not wait too long, the body needs nutrition to function at its best, your son will start to feel better and have more energy, etc. I could go on and on... I really believe in this intervention. I realize it is a change and change is difficult but in the end you will have greater peace of mind and your son will be in much better health. Please let me know if I can answer any questions.

Laurie Hoovestol said:
Thank you so much for your words of wisdom. My son is very much against getting a tube. The gastroenterologist that he seen 6 mos. ago said then that he would need to see my son again if dropped into the 80 lb area. We are there! My son wants to try this week again to gain some weight. We made a deal that we would give him this week and if not we will take him in and discuss it more seriously with the Dr. Thanks again and thanks for offering to visit by email. I appreciate that very much.
Katherine M. Reynoldson said:
Laurie,
I am a big proponent of feeding tubes, I thnk alot of young men with DMD have a very hard time taking in the calories and getting the nutrion that they need without one. My son has had a feeding tube for many years and it has made a huge difference in his life (for the better). If your son is having as much trouble as you say I would not hesitate to get a tube placed as soon as possible. I would be happy to talk to you more about this privately via email if you are interested.
Katherine
Both of my sons Aaron 18 and Andrew 22 have feeding tubes, they both are now able to keep their weight up and have more energy during the day. I would recommend it. Aaron also would get headaches and get nauseous, sometimes would throwup, it would happen sometimes several days in a row or sporadically, but once it went away he was fine. He does not have migraines, our pulmonologist thinks it was CO2 related, he was on medication which the name escapes me now, but it helps to bring c02 levels down, its what climbers take for high altitude sickness, he was on a bipap, but now uses a V-pap pretty much 24/7 with oxygen, we have changed his settings, he is no longer taking the medication because it was only a short term option the doctor wanted to use, so between the medication and changing his machine and settings, that seemed to help his headaches, or its a coincidence, I don't know if we will ever know for sure. But he has not had any headaches lately. .

Laurie Hoovestol said:
One more thing, Three weeks ago he got a headache, a bad one! He stayed in bed all day and was throwing up all day. By seven that night he was completley fine. Today he woke up with the same headache and it's following the same pattern. Do you think that his nutrition may have alot to do with it? He ate and drank well the day before both of these instances so I don't know. I know that dehydration can do that to but I dont think that is the case either. I wanted him to go to the dr today but of course he is against it. When he was younger we made decisions that we thought were in his best interest which I think they were. The last couple years we have tried to have him make some adult decisions himself but now I feel like I need to make these medical decisions for him!!! It is very scary at this point. I've made appointments for the gastroenterologist and his lung dr which he is due to go in and see. Thanks for your help!

Katherine M. Reynoldson said:
I have spoken with several families over the years and I can't emphasize enough how important good nutrition is for this group of boys and young men. The procedure itself is very, very quick and there really is nothing that will be visible. Having the feeding tube would really take the pressure off of everyone with respect to your son being able to eat enough during the day. When my son first got his feeding tube we ran the pump at night which then left him free to eat as much or as little as he felt he could during the day. You will be amazed at how many calories you can get in during the course of the night. His friends would never know. There are so many options, you can use a pump at night, you can bolus feed (if your son tolerates that), you can do a combination. I would not wait too long, the body needs nutrition to function at its best, your son will start to feel better and have more energy, etc. I could go on and on... I really believe in this intervention. I realize it is a change and change is difficult but in the end you will have greater peace of mind and your son will be in much better health. Please let me know if I can answer any questions.

Laurie Hoovestol said:
Thank you so much for your words of wisdom. My son is very much against getting a tube. The gastroenterologist that he seen 6 mos. ago said then that he would need to see my son again if dropped into the 80 lb area. We are there! My son wants to try this week again to gain some weight. We made a deal that we would give him this week and if not we will take him in and discuss it more seriously with the Dr. Thanks again and thanks for offering to visit by email. I appreciate that very much.
Katherine M. Reynoldson said:
Laurie,
I am a big proponent of feeding tubes, I thnk alot of young men with DMD have a very hard time taking in the calories and getting the nutrion that they need without one. My son has had a feeding tube for many years and it has made a huge difference in his life (for the better). If your son is having as much trouble as you say I would not hesitate to get a tube placed as soon as possible. I would be happy to talk to you more about this privately via email if you are interested.
Katherine
hi laurie,
my son has had a feeding tube for 2 yrs i know i sounds scarey but it been a god sent he lost 80 lbs because of several issues he started out a continous feed and now only need 2 can of nutrin and depending on how his day has went as far as eating we adjust the amount of feed and also if not feeling well can keep him hydrated also if he get to thin an isnt getting good nutrion if he getb sick nothing to fall back on .any questions dont hesitate to ask .i would be glad to help

Diane Spiess

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2020   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service