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New User
Posts: 1
| hi. my name is keri and my son has conj. scoliosis. he has a pretty severe curvature and has had a veptr device put in. he's had a few lengthening surgeries and has done wonderful. however, his real issue is gaining weight. he's 8 yrs. old and only weighs 38 lbs. he's on a high calorie diet and drinks weight gaining shakes called scandishakes. unfortunately, he burns up all the calories he takes in. you mentioned something about the way they have to breath makes them burn up their calories. in my case i have doctors and social workers breathing down my neck, and acting like we don't feed him. i guess i just need someone to vent to. you seem like you have a good handle on things. |
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Elite Veteran
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Location: nixa mo | (he's 8 yrs. old and only weighs 38 lbs. he's on a high calorie diet and drinks weight gaining shakes called scandishakes. unfortunately, he burns up all the calories he takes in. you mentioned something about the way they have to breath makes them burn up their calories. )
I totally understand. While Noah is almost 7 he also weighs only 38 lbs. Luckily our pedi totally understands and surgeon. I hope you don"t have too much trouble Noah started refusing scandishakes 2 years ago and now will only do carnation instant breakfast. However, he is finally starting to eat better. But I'm afraid he burns them up as soon as he takes them in crazy kid. |
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Expert
Posts: 3243
 
Location: Utah | Have either of you tried Periactin? This is an old drug (originally used as an antihistamine) that is quite safe. The antihistamine benefits are few (the new drugs are much more effective for allergies) but the weight gain benefits are great in about 40% of the people who take it. Braydon was one of those who did not benefit from it, but many kids I know do. It also seems to stop working after a while, so many kids take a break for a couple of weeks, then start taking it again and they do well. Something to ask the docs.
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Elite Veteran
Posts: 1127
Location: Vancouver, Canada | Very common problem with the kids on this board. My guys are doing a lot better since the oldest was diagnosed with gluten issues and we no longer eat gluten. William is almost 8 and is still about 40 lbs too. |
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Veteran
Posts: 166
| My son Christopher is 8 and 40 pounds. He had a G tube put in several years ago but we have not been able to use it due to TEF issues. We have now switched the tube to a GJ tube and it is working extremely well. I know a feeding tube sounds like a huge thing, but it really isnt. The only other thing I can recommend is DuoCal. It is a powder that goes in their food. I hope you find something that works. We all know how frustrating weight gain is for these kids. |
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Member
Posts: 11
| Viktor is 9, and weighs in at 40 lbs. Weight gain is slow, and sometimes painful. But over the last 1-2 years he has started to eat quite more than earlier (he also has esophagus-problems, food getting stuck). We also give him all the extra calories that can be had, calorie-drinks, never tell him to stop eating fries at McD etc.
Earlier we have breathed down his neck, but now we let him eat in his own pace. We do hope that sometime the turn will come, and weight-gain comes.
Length-wise he grows fairly normal (although he is a bit short still). |
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Weight gain
