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 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 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.
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...