More ? about my DS that will not eat... — The Bump
Special Needs

More ? about my DS that will not eat...

Hello again:)  So my DS is still not really eating.  He eats about 10-20 cracker type things a day (about the size of a wheat thin), drinks about 4 oz. of juice with his Mirilax, and then drinks maybe 24 oz. of formula.  Everyone (gi dr., pedi, therapists, ME) are worried about his nutrient intake.  He will not drink Elecare (which would provide total nutrition) so only gets infant formula.

I am trying to get a deeming waiver to get him need based medicare but the process takes up to 6 months!  My concern is that by then he will be on a feeding tube.  All of his doctors and therapists are like well lets just wait and see, but I am having a really hard time with that!  I know he is not getting his nutrients, and he is losing weight.  I also have permanent nerve damage from a misdiagnosed b12 deficiency (I am vegan) so I am very wary of doctors being too lenient with their care! 

I guess my question is has anyone else been through this? My DS is mainly not eating bc of sensory issues, and the feeding clinic that is best for him we cannot afford without assistance.  I don't want to push for a feeding tube bc that would be a major setback, but I don't want to wait too long before being more proactive...

Any input is greatly appreciated:)  I am so overwhelmed.... 

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Re: More ? about my DS that will not eat...

  • I am so sorry that this is going on...I know nothing really about it so I am afraid I don't have anything to offer.  It just made me think of a family friend who's son wouldn't eat anything except popcorn for about 4 years.  He would drink smoothies though, so she would pack those with all kinds of supplements.  I'm sure you've tried this, but just a thought... GL!
  • DD doesn't eat much, either, but she will drink Pediasure. We did have a hard time getting her started, so we mixed her bottles half pediasure and half formula for a while then advanced her to full pediasure. Not sure if that helps, but it's what we did. Good luck.
    I prayed for this child, and the LORD has granted me what I asked of him. 1Samuel 1:27 Image and video hosting by TinyPic Lilypie Third Birthday tickers Lilypie First Birthday tickers Team Peeta Tag Pictures, Images and Photos
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  • I may not be the most qualified to answer this, but the suggestion about mixing in something like Pediasure gradually is a good one. Even if you're only increasing the amount of the supplement by maybe an ounce at a time, gradually he will accept more of the supplement. There may be something more you can do eventually, but at least that will make you feel like you are doing something proactive while you are waiting for the doctors to help you.

    You  could also try to associate a new food or 2 with an activity he really enjoys. For example, if there is a certain toy he LOVES, use it only at meal times - if he takes a bite of a food you are trying to get him to eat, he gets the toy for a short time. You may have to start with him just tolerating the food being presented at first, or you may be able to get a few bites in before allowing access to the toy. Just be consistent, and reserve whatever reinforcer (toy) you chose for mealtimes.

  • Please don't think of a feeding tube as a major setback.  For many kids, a feeding tube can make the difference between being healthy and being sick.  Over time, the lack of nutrition can also lead to developmental delays.

    Our son has a feeding tube because he wasn't gaining weight due to complications with CF & (at that time) undiagnosed Eosinophilic Esophagitus and while it isn't perfect and we still struggle to get him to eat, the change in his energy level, the elimination of developmental delays and his growth are worth the challenges of the feeding tube.

    Baby Birthday Ticker Ticker Emergency ileostomy 11/28/10, CF dx on 12/3/10 and ileostomy takedown 1/24/11, feeding tube placed 7/1/11...still going strong! Little one lost 5w5d, 5/27/2012. CP 8/26/2012
  • We've been through something very similar, so I'll tell you what worked for us.  Very recently, our DS would only eat yogurt and infant formula.  Refused Pediasure and pretty much any other food we offered him. 

    I finally brought to a feeding therapist who said he had sensory processing issues.  She offered a few tips to help:

    • Massage your DS using squeezes.  Start with his feet and work your way up to his head.  This helps desensitize the input.  Do this before you feed him.
    • Buy a Nuk brush ($3) and let him chew on it whenever and dip it in his formula/food if he wants to.  This gets him used to texture.  
    • Buy a vibrating toothbrush.  Put it on his leg, then arm, then gradually put it next to his mouth.  Work up to getting it into his mouth.

    The Feeding Therapist was too expensive and didn't take insurance, so I  researched other options.

    I read that most of the time, kids this age (your DS's age) refuse to eat because they want to be independent/in control and eating or not eating is something they can control.

    It's our job to provide them with the proper nutrition.  They decide how much food to eat and how fast.  Also, hungry kids will be a lot more receptive to food.

    So, I immediately started serving him the foods he should eat (protein, veggies, fruit) and he barely ate anything.  But once that meal was over, I didn't feed him any of his favorite food (yogurt.)  And he cried.  But when it was time for the next meal, he was very hungry and ate 2 new foods.  

    I also let him try to feed himself as much as possible, even if he gets it all over himself and the floor.  He needs to practice using utensils and getting food from the bowl to his mouth.  Sometimes I give him food and leave him alone for a few minutes.  His fine motor skills have improved drastically recently!

    Finally, his cousin came to visit over Thanksgiving.  She is only a month older and eats anything.  He watched her eat and started imitating her.  When I served them both snacks, they would push each other out of the way to get to them. I was so happy to see DS shoveling food in his mouth before his cousin could get to it!

    It's only been a couple of weeks and he is eating like a champ.

    I hope these tips help.  I was very overwhelmed and at a loss just a few weeks ago.  And today I feel so relieved.  I hope that you get there too.

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