Ds is 14mos. and only 16lbs. He is a little peanut. He looks about 9-12mos. He shows interest in solid food, but can't swallow it without gagging and vomiting. He is on nutramigen formula, but not gaining weight. He was diagnosed with Failure to thrive in April, and is beginning EI for swallowing. He isn't delayed in any other area. Today the GI Dr. spoke to us about admitting him for a feeding tube through the nose. He is concerned about his poor wt. gain and feeding difficulty with solids. Its temporary, but will need to spend 3-5 days in the children's hospital until they see weight gain. Does anyone have experience with this? Im extremely nervous and stressed. Any advice would be helpful.
I do not have personal experience with this, but I am sure others will chime in.
Have you gone to an endocrinologist yet? Maybe you should look at his growth hormone levels. Another professional to get an opinion from is a nutritionist.
I also just read a book by a nutritionist (Kelly Dorfman) who recommends checking zinc levels for FTT kids, especially those who may have been on reflux meds. It is totally a shot in the dark but worth trying.
DD has a g-tube. Actually, she's 3 and 14 pounds so we're also in the peanut club. Here are the questions I'd be thinking about: Have you had a swallow study done to understand how much the gagging is effecting him in terms of aspiration or penetration? Does the gagging only occur with specific textures or across the board? Ie. Does it matter if its a stage 1 baby food versus a stage 3 or a meltable solid? What has your feeding therapist said in terms of his oral motor development? Is his language on par with peers? If it is and continues to be, you may be able to rule out some OM specific issues. Is his weight currently dropping or is he losing standing with his weight percentiles? This is much more important in terms of FTT than weight alone as individual kids are so vastly different from each other.
The tube you're talking about is a ng-tube. Its a temporary solution. If they put it in, they'll continue the formula routed through his nose. If there's a problem with the formula in terms of allergies that won't do anything. I'd want to rule that out ahead of time. Have you tried any other formulas or drinks? At one whole milk/chocolate milk would be suitable as would juices. Obviously, he couldn't survive on this alone, but as much as possible you want to give him real food. Other formulas are much more allergen-free that nutramigen. Pediasmart is an organic one that's free of most of the major allergens. Elecare, Vital Jr., and compleat are also popular in the medical world. We formula hopped quite a bit, never finding anything that DD could tolerate until we went blended. We puree all of DDs foods based on the food pyramid. She has the healthiest diet of anyone I've ever met. Lamb, avocados, swiss chard, etc. We met with a nutritionist. (Actually, we also worked with Kelly that PP mentioned), drew out a plan, etc. Unless, the issue is with swallowing alone, getting the tube likely won't by-pass the GI issues. And even if you do, you'll likely want to maintain as much oral eating as possible. So this will be a vital piece to the puzzle.
Honestly 16 pounds doesn't sound that small for a one year, to me. But then again I may not be the best person to ask. Several of us here have children with FTT and tubes. Let us know if you have any more specific questions.
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DS has had an NG tube on & off throughout his life for feeding issues & we have hovered around a g-tube many times. It sounds to me (as PP said) that there needs to be a lot more testing done to figure out what is really going on. How much formula does LO take in 24 hrs? There is a big difference in treatment plans if you're talking about FTT secondary to inadequate oral intake vs FTT despite appearing to have adequate caloric intake. DS had a combo of both & it took close to a year to figure out the entire picture. He has swallowing issues with thin liquids but does not aspirate & his swallow studies are always normal. His issue is extremely low oral/motor control & sensation from Sensory Processing Disorder. His neurologist said that his SPD also really affects how he uses calories so even when we do get enough in him, he doesn't gain weight like your average kid would. Another major part of the picture with him is multiple food allergies. He is allergic to all dairy, eggs, gluten, oat, all tree nuts & peanuts, sesame & beef (& counting, unfortunately!) we worked with our local children's hospital at first who did so many tests & procedures & completely failed to identify anything! I was completely frustrated & the last straw came when our GI told me that it was "impossible" to test for allergies before the age of 2! I'd done my research & I knew that wasn't true so we moved on to a different hospital! Within the first 2 wks of transferring we has seen an amazing GI & had allergy testing & a feeding evaluation. I feel like some of the issues we have frequently get missed during the FTT work up & it takes a ton of effort to get some docs to consider them as causes. Our LO is still a peanut (20 lbs at 20 months) but he has come so far & no longer looks emaciated. The NG tube itself is really not a big deal. It sounds scary at first but it is fairly easy to take care of, except when they pull it out! You may want to ask about having the testing done first & see if they can find an underlying cause for the FTT. It's always a concern that the NG tube is going to make any swallowing dysfunction worse because the tube itself cause irritation & makes swallowing feel funny. Good luck & please let me know of you have any questions regarding specific tests or about tubes. The last time he had one in was between 12-15 months so he was right about the age of your LO.
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Re: Anybody's LO have FTT with a feeding tube?
I do not have personal experience with this, but I am sure others will chime in.
Have you gone to an endocrinologist yet? Maybe you should look at his growth hormone levels. Another professional to get an opinion from is a nutritionist.
I also just read a book by a nutritionist (Kelly Dorfman) who recommends checking zinc levels for FTT kids, especially those who may have been on reflux meds. It is totally a shot in the dark but worth trying.
DD has a g-tube. Actually, she's 3 and 14 pounds so we're also in the peanut club. Here are the questions I'd be thinking about: Have you had a swallow study done to understand how much the gagging is effecting him in terms of aspiration or penetration? Does the gagging only occur with specific textures or across the board? Ie. Does it matter if its a stage 1 baby food versus a stage 3 or a meltable solid? What has your feeding therapist said in terms of his oral motor development? Is his language on par with peers? If it is and continues to be, you may be able to rule out some OM specific issues. Is his weight currently dropping or is he losing standing with his weight percentiles? This is much more important in terms of FTT than weight alone as individual kids are so vastly different from each other.
The tube you're talking about is a ng-tube. Its a temporary solution. If they put it in, they'll continue the formula routed through his nose. If there's a problem with the formula in terms of allergies that won't do anything. I'd want to rule that out ahead of time. Have you tried any other formulas or drinks? At one whole milk/chocolate milk would be suitable as would juices. Obviously, he couldn't survive on this alone, but as much as possible you want to give him real food. Other formulas are much more allergen-free that nutramigen. Pediasmart is an organic one that's free of most of the major allergens. Elecare, Vital Jr., and compleat are also popular in the medical world. We formula hopped quite a bit, never finding anything that DD could tolerate until we went blended. We puree all of DDs foods based on the food pyramid. She has the healthiest diet of anyone I've ever met. Lamb, avocados, swiss chard, etc. We met with a nutritionist. (Actually, we also worked with Kelly that PP mentioned), drew out a plan, etc. Unless, the issue is with swallowing alone, getting the tube likely won't by-pass the GI issues. And even if you do, you'll likely want to maintain as much oral eating as possible. So this will be a vital piece to the puzzle.
Honestly 16 pounds doesn't sound that small for a one year, to me. But then again I may not be the best person to ask. Several of us here have children with FTT and tubes. Let us know if you have any more specific questions.