I was wondering if there are any other families out there that have a son in there teens that have a lack of appetite..My son just does not feel like eating he said he is not hungry. He has had a weigth loss which I can notice. He goes to the doctors this month I am hoping they have some answers for me. He recently had a rod put in his back in December 2008 and at this time he weighed 82 lbs and he is 17.
I appreciate any information anyone can give me.

Thanks Penny

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Is he on other medications? certain medications can reduce appetite? I'm on prednisone and my problem is the opposite. I have alot of extra weight that I need to get rid of. I'm glad you are going to take him to the doctor, he should be able to help you. Best of luck. :)
Hi Susana,, Yes he is on Deflazacort..But I do not think that is what it is from because a few years ago I thought he was going to blow up because he had gained so much weight.. The last couple of years he started to lose weight but since his surgery in December he was 82 lbs and I am positive he is even less now.. He tells me that when he eats that he just can not eat anymore because he is full. Tonight he is getting concerned on this himself which is good then maybe he will try to eat more. Going to buy some Ensure drinks for him tomorrow and start him on them.. Thanks for your reply and be careful yourself on losing too much weight...
Penny

Susana Arroyo said:
Is he on other medications? certain medications can reduce appetite? I'm on prednisone and my problem is the opposite. I have alot of extra weight that I need to get rid of. I'm glad you are going to take him to the doctor, he should be able to help you. Best of luck. :)
My son had a similar thing happen when he was 14. His appetite dropped and he lost weight. The G.I. doctor put him on acid reflux medications and that helped a lot. He had gotten down to 72 pounds and the medication allowed him to get up to 84 pounds. He got a feeding tube at 17 and initially we used that just for supplemental feeding at night. When food aspiration became a problem we were able to go to continuous feeds from a very small feeding pump that hangs on his wheelchair. He is 21 now. His weight is 102 and he looks great.

Ask about acid reflux....maybe they can just put him on the medication to see if it helps.
Hi Penny, I am new to this forum but not new to DMD. My son, Joshua, is 21. A few years ago he was having a lot of issues with acid reflux. It had gotten to the point where his voice was getting hoarse. While this was happening, he wasn't eating as much because it was too uncomfortable. He had also had several hospitalizations because of pneumonia and would always lose weight while in the hospital. He got down to about 90 lbs. after he'd been up to about 160 while on prednizone. During a hospitalization his drs. recommended that he get a feeding tube. At first of course we were terrified that we had arrived at that point. But after consulting with Josh to find out his wishes, we went ahead with it. I have to say that it has been a godsend. It takes some getting used to, but I believe he is far healthier now because of it. He weighs about 125lbs and we never have to worry about forcing him to eat for nutrition. He can still eat by mouth and enjoy food as he chooses. Most days he'll eat one or two meals by mouth with tube feedings to supplement. He has actually been happy about it because sometimes he just feels too tired to physically eat but yet feels hungry. This is not uncommon in DMD as the act of eating requires lots of muscle use. Talk to his primary doctor if you don't already have a GI specialist and see what options there might be. I always thought a feeding tube would come as an "end of life" decision and that we wouldn't want to do that to Josh. However, when the doctors recommended it, Josh was not at the end stage of the disease. I now have a different perspective as I have seen how having this good nutrition has benefitted his quality of life these past several years. Thinking of you in the midst of difficult decisions.
Hi Kathy,,, Thanks for your comment. I had phoned Dillon's doctor about 2 weeks ago and told them I was concerned about his weight and his lack of eating. They had suggested to put him on the Boost shakes along with his meals and this would help him gain more weight. Dillon has now realized that he needs to eat, he has seen himself in the mirror and is not liking what he looks like ( being so skinny) but is afraid of becoming fat. I talked to him about it and said that he needed to gain a bit of weight or he would not be able to function if he continued to lose and it may come to the point that he would have to go on a feeding tube and he does not want this. He has now started to eat more and is constantly asking for extra at meals and is drinking his Boost drinks along with his meals..We go to the doctors on September 22 and they should be able to tell me more.
Well take care, talk to you soon.
Penny

Kathy Cunliffe said:
Hi Penny, I am new to this forum but not new to DMD. My son, Joshua, is 21. A few years ago he was having a lot of issues with acid reflux. It had gotten to the point where his voice was getting hoarse. While this was happening, he wasn't eating as much because it was too uncomfortable. He had also had several hospitalizations because of pneumonia and would always lose weight while in the hospital. He got down to about 90 lbs. after he'd been up to about 160 while on prednizone. During a hospitalization his drs. recommended that he get a feeding tube. At first of course we were terrified that we had arrived at that point. But after consulting with Josh to find out his wishes, we went ahead with it. I have to say that it has been a godsend. It takes some getting used to, but I believe he is far healthier now because of it. He weighs about 125lbs and we never have to worry about forcing him to eat for nutrition. He can still eat by mouth and enjoy food as he chooses. Most days he'll eat one or two meals by mouth with tube feedings to supplement. He has actually been happy about it because sometimes he just feels too tired to physically eat but yet feels hungry. This is not uncommon in DMD as the act of eating requires lots of muscle use. Talk to his primary doctor if you don't already have a GI specialist and see what options there might be. I always thought a feeding tube would come as an "end of life" decision and that we wouldn't want to do that to Josh. However, when the doctors recommended it, Josh was not at the end stage of the disease. I now have a different perspective as I have seen how having this good nutrition has benefitted his quality of life these past several years. Thinking of you in the midst of difficult decisions.
hi penny ,
let me introduce my self my name is Diane mom of a 23 yr old with dmd i'm a carrier and also my 25 yrold daughter is also a carrier .i see were your son having appitite issue just wondering it may sound crazy but just wondering has your son ever had a sleep study done at that age my son had sleep apnea and ended up needing a bipap machine because he has sleep apnea just a thought it may effect his appatite ? also my son has had gallbladder issues and stomach motilty issues so hope yu find a answer !
Hi my name is Ian from south wales in the UK. I'm 25 living with DMD. My loss of appetite problems at 19 were down to an actual problem chewing and swallowing food. I could chew things into swallowable "bits" in my mouth but then when I tried to swallow, I couldn't activate the "mechanism" and would choke or require many gulps to clear things. I even had to spit bits i couldn't eat out, and I felt little embarrassed by it. I started losing weight and by 2007 I went down to 6 stone 4 or 84 pounds. I only regained it by eating pureed food, as smooth as water no bits at all. I have fruits, veg and meats and enjoy it. I had it supplemented with calshake milkshakes and this oiley emulsion stuff. Very quickly I gained weight, and im now 9 stone 4 or 126 pounds, and looking well. They tried putting a G I tube in but because of my un-operated scoliosis I cannot lie flat so the procedure couldnt be preformed. If i need 1, a "rig" will need to be done and im nervous about that as theres a high failure rate.
Hi Ian...
Thanks for sharing your experience. I was aware that chewing and swallowing are likely to become an issue. I think that also increases the chance for aspiration. It's good to hear that you've found an alternative solution for now. I know any surgery can be very worrisome so I can understand the concern about a complicated procedure. My son has been taking medications that have really helped with his acid reflux. He also takes a small dose of a medicine that helps with esophageal motility. It can cause some negative side affects if taken in larger quantities over a long period of time, but this smaller dose seems to be working well for him and he can still eat by mouth as he chooses. As I said before, the G-tube allows him to receive supplemental feedings that have really helped him gain weight and maintain proper nutrition. Again, thanks for being willing to share your experience.

Kathy

Ian Anthony Griffiths said:
Hi my name is Ian from south wales in the UK. I'm 25 living with DMD. My loss of appetite problems at 19 were down to an actual problem chewing and swallowing food. I could chew things into swallowable "bits" in my mouth but then when I tried to swallow, I couldn't activate the "mechanism" and would choke or require many gulps to clear things. I even had to spit bits i couldn't eat out, and I felt little embarrassed by it. I started losing weight and by 2007 I went down to 6 stone 4 or 84 pounds. I only regained it by eating pureed food, as smooth as water no bits at all. I have fruits, veg and meats and enjoy it. I had it supplemented with calshake milkshakes and this oiley emulsion stuff. Very quickly I gained weight, and im now 9 stone 4 or 126 pounds, and looking well. They tried putting a G I tube in but because of my un-operated scoliosis I cannot lie flat so the procedure couldnt be preformed. If i need 1, a "rig" will need to be done and im nervous about that as theres a high failure rate.
Hello Everyone,,, Just a follow-up on my son Dillon. Since I last posted my son has made a big change in his eating habits. He is eating more and also drinking Boost shakes along with his meals.. I took him to the doctors yesterday and Dillon brought it up to his doctors about how skinny he was looking and he did not like it and his issues with going to the bathroom. Come to find out that Dillon not going to the bathroom regularly is an issue with his eating as he is feeling full. The doctors have put him on some different meds ( over the counter ) to help him with going to the bathroom and to clean his system out and he has told Dillon that this will help him with his eating habits. I was glad to hear that so no worries at this time with thinking he would have to get a feeding tube...
My pleasure to share, Kathy
My son is 19, and has had eatin problems for a while now...his stomache hurts all the time, cannot eat much food at all, and when he does, his stomache kills him so much that he just wants to go back to bed...he has lost weight recently, and I have tried everything...and I mean everything...
Hi Elaine,

Thanks for your post. Sorry to here that your son has so much pain when he eats. Dillon has not had that problem, just not hungry. So I contacted the doctors and they told me to put him on boost shakes and puddings this would help him gain his weight back. He only drank the shakes with his meals..He is back on track now and no longer drinking them.. I hope that your son all the best and hope that you find a solution for him.

Take Care.
Penny

ELAINE SCHAAD said:
My son is 19, and has had eatin problems for a while now...his stomache hurts all the time, cannot eat much food at all, and when he does, his stomache kills him so much that he just wants to go back to bed...he has lost weight recently, and I have tried everything...and I mean everything...

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