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Permalink Reply by Liisa Underwood on November 30, 2009 at 10:46am

Wow, Heather. Too young... My boy is 4, so I'm afraid I do not have any advice. My thoughts and prayers are with you and your son.

Liisa

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Permalink Reply by sharon Wilmot on November 30, 2009 at 1:37pm

Sorry to hear that this is happening to your son at such a young age.

Liisa Underwood said:

Wow, Heather. Too young... My boy is 4, so I'm afraid I do not have any advice. My thoughts and prayers are with you and your son.

Liisa

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Permalink Reply by Samantha Dearing on November 30, 2009 at 8:34pm

Our son had a feeding tube put in when he was 7.8yrs old. He stopped eating and weighed around 30lbs. He was fed through his tube for almost a year before he started eating enough calories to sustain him. We have kept the tube in and still use it for some meds and for hydration in the hot months or when he gets sick. He had an ng(nasal gastric) tube placed, then about a month later had a peg placed in his stomach and then a couple of months after that had his actual feeding tube that is flush with his skin placed. We just have to change it out every few months and keep it clean. Any other questions, feel free to ask.

--Samantha

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Permalink Reply by Ofelia Marin on November 30, 2009 at 8:58pm

What was the reason for him not being able to eat at 7.8? I assume it is not the DMD progression since he was eating well one year later (?). I always thought that when the DMD progression requires a feeding tube it is irreversible. That would be irreversible w/o a disease modifying treatment of course.

Samantha Dearing said:

Our son had a feeding tube put in when he was 7.8yrs old. He stopped eating and weighed around 30lbs. He was fed through his tube for almost a year before he started eating enough calories to sustain him. We have kept the tube in and still use it for some meds and for hydration in the hot months or when he gets sick. He had an ng(nasal gastric) tube placed, then about a month later had a peg placed in his stomach and then a couple of months after that had his actual feeding tube that is flush with his skin placed. We just have to change it out every few months and keep it clean. Any other questions, feel free to ask.

--Samantha

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Permalink Reply by Samantha Dearing on December 1, 2009 at 8:49am

We never really found a cause as to why he stopped eating. It wasnt the dmd. He had been in the hospital three times in two months for Rotovirus and every time he would stop eating for 5-6 days. He was in there at the end of November for it and then we realized that he was only eating about 100-200 calories a day. He had every test under the sun to try and find a reason and the only thing that was found was that at the age of almost 8, his stomach was the size of a 2yr old child. It took his stomach over two hours to digest even a small amount. So, gastroparesis(slow emptying stomach) was his official diagnosis, but the drs said that isnt the only reason because he should have been eating all the time to stay satisfied. We finally said, enough and stopped all the test and went with the feeding tube. he put on weight, looked and felt better and so we kept it.

--Samantha

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