Hello everyone. My son is 17 1/2 years old with DMD. Like many boys with DMD, his appetite and weight have decreased to now weighing only 85 pounds. I think its a combination of problems... he is off steroids for 2 years now and he is having diffuculty swallowing. We started Carnation Instant Breakfast powders since January at the suggestion of our feeding specialist. He hated the boost, ensure supplements because he found them chalky tasting. So... now as things have progressed they have planned to insert a Gastrostomy tube into his stomach for feeding. Just wondering if anyone has experienced this and what was it like? Thank you

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My son had a g-tube put in when he was 17. He had gotten down to 78 lbs. Whe just used it for supplemental night time feedling at first. After he had aspiration pnuemonia, we started to use it for continuous feeding. He has a little backpack that holds the bag of formula and this small pump. It works great. He is now 102 lbs and looks great. I wish we had gotten the g-tube sooner.
My son Justin has had a gtube since he was 7.8yrs old(he is now 13.5yrs old). He stopped eating for awhile. It had nothing to do with dmd. He used it at first for round the clock feeds, but when he started eating again, we started using it for some oral meds and hydration only. We refuse to have it taken out. We just clean it everyday and we change the actual button ourselves every few months. The pumps are small and easy to hide. Justin started with a Bard button and now has a mickey.

my son is 23 and he used to weigh over 200lbs and he started having bretahing diffculty and gallbladder issues in 2006 he lost over 80 lbs through all his problems and he has had a feeding tube for 2 yrs he has more strenght now that he at a good weight for him we have had a few problems with it getting infected but nothing we couldnt manage but over all he doesnt reget getting it it also is great when they sick and need extra fluid i just give him more fluids to keep him hydrated!
Both of Sons have G-tubes, My youngest (19 now) received his in Feb 07, he lost alot of weight, got down to 70 pounds, he just had hardly any energy and got short of breath while eating so he would get tired, he now weighs about 100 pounds, his is a mickey button, my older son who is 23, received his feeding tube 2 years ago, October of 2007, he was starting to loose weight, he use to weigh about 132 pounds, now he weighs 117 pounds, we use feeding tube to supplement his eating so he won't lose anymore weight his is a regular Gastrostomy tube, I change both of them, I prefer the Mickey button over the Reg tube, we were not able to use a mickey button for my 23 year old, but they are easy to change and keep clean.
Thanks everyone for your answers. Our son and us are ready for it, we know its time. His surgery is set for October 6th. I'll let you know how it goes. The only concern I have about the surgery is the anesthesia. If they do the proceedure like done in adults with local anesthetic to the throat and abdominal wall vs. general anesthetic, it should go ok. But if they have to put him to sleep, I am worried. He does not do well with general anesthesia because of the risks and his heart involvement.
As a parent of a child with DMD, the worries never end do they? Other parents don't realize the worries, the stress. Thank you for listening. Eunice

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