Special Needs

Advice needed on feeding issues

Hi everyone, I am looking for advice on our feeding situation with ds. Ds was born with severe IUGR (3lb 3oz), which I'm now convinced from my experience and others with IUGR kiddos means no natural hunger signals. He does ask for food sometimes, but the quantity he eats on his own would never sustain him. He stayed off the growth charts until about 15 months old when he climbed way up to 3rd percentile after starting pediasure (height was about 20th at that point). After he started walking around 17 months, he kind of went on a feeding strike and just didn't want to eat anything of the 'very' limited diet he was already eating. We were already singing songs, etc.. to get him to eat at that point. So one day we tried a video while he ate and it was magic. It gave him something to focus on instead of food, which seems to cause him anxiety. He also clearly has some sensory issues as well (prefers crunchy things and will sometimes tolerate non-crunchy things if combined with crunchy). I will also just add that we also tried MANY types of feeding therapies with very good practitioners which only ever resulted in regression and increased anxiety, so they just don't work for us.

Anyhow, between 18 months and 24 months, with videos, he went from 3rd to 40th percentile for weight and 20th to 60th for height. Amazing growth! He also seemed much more relaxed around meals and food and when away from the table, will sometimes request new foods he sees others eating and lick them or maybe even nibble, a big deal for him. That said, meals now involve a gazillion youtube videos with us pausing, he takes a bite/sip, and we start them again, etc... and last an hour. Not ideal. But at the same time, nothing else achieved this growth. We want to wean off of them, but when we experiment with stopping them and waiting for his 'natural hunger' (which I'm convinced he doesn't have due to birth related injuries), it never kicks in. He is perfectly happy to not eat or drink an ounce for many meals in a row. He is also 27 months now and extremely active, and I know that even NT kids at this age fight food.

What would you do? Keep up videos or work on developing his natural hunger and risk weight loss? Or do we wait until he is older? He will start preschool in the fall for 3 days per week and they do lunch there. I doubt he will eat much if anything in that environment on his own. I'm just not sure what to do and am wondering if anyone has any advice. I'm SO DONE with 'feeding experts'. Their grand plans just don't work for ds at all.

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Re: Advice needed on feeding issues

  • I have no good advice- I also feel that our FT have been kinda a joke, at best (our private therapist I think even set us back, like you).  The one thing I heard, because DD also still has to sit in a bouncy seat, with a movie on to drink her 2 bo

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  • It is just so hard and very stressful! I completely hear you. We also didn't stop the bottle until maybe around 19 months once we had more luck with videos and felt safe letting them go). 
    imageLilypie Premature Baby tickers imageLilypie Premature Baby tickers
  • I think that for feeding issues, the bottom line is that you want him to grow and develop.  So whatever works is what you should stick with.

    If I were in your place, I would continue with the videos and keep trying/pushing a little every onc

  • I don't have any advice, just wanted to say good luck. Greyson is 16 months old, and is still on his bottle, and still only willingly eats them laying in his crib. An awful idea normally, but it's better then his dropping off the charts again because he w
  • Thanks everyone. I am still in contact with this one particular feeding 'expert' through Children's since she handles ds's prevacid prescription, and she is constantly trying her best to make us feel like we are royally $%^ing up ds by doing the videos an
    imageLilypie Premature Baby tickers imageLilypie Premature Baby tickers
  • My son was born at 2 pounds 10 ounces and we have struggled with eating issues since the NICU.   He just recentley really started to grow and finally on the charts.  He has been less than 3% since we brought him home from the hospital.&n

    10/17/2009 - Our Miracle came 10 weeks early. IF,2 MC and 1 Preemie we have our miracle.. Baby Hope 10 weeks 5days was taken from us on Dec 18, 2007. Forever with us and Forever missed. Triplets Lost baby A @ weeks, Lost Baby B at 6 weeks and lost baby Abigail at 14 weeks when she was born to little for this life..... Forever with us ....
  • Can I ask how much your lo weighs?
    10/17/2009 - Our Miracle came 10 weeks early. IF,2 MC and 1 Preemie we have our miracle.. Baby Hope 10 weeks 5days was taken from us on Dec 18, 2007. Forever with us and Forever missed. Triplets Lost baby A @ weeks, Lost Baby B at 6 weeks and lost baby Abigail at 14 weeks when she was born to little for this life..... Forever with us ....
  • imageirishbaby0708:
    Can I ask how much your lo weighs?

    He is about 27lbs now, which is where he was

    imageLilypie Premature Baby tickers imageLilypie Premature Baby tickers
  • My lo is 3 1/2 and just broke 30 pounds which was huge.  He was the same weight as your Lo at 1.  From 1-2 was a huge struggle and he barely gained but has been gaining steadily in the last 6-9 months.  Dh and I are guilty of spoon/ fork

    10/17/2009 - Our Miracle came 10 weeks early. IF,2 MC and 1 Preemie we have our miracle.. Baby Hope 10 weeks 5days was taken from us on Dec 18, 2007. Forever with us and Forever missed. Triplets Lost baby A @ weeks, Lost Baby B at 6 weeks and lost baby Abigail at 14 weeks when she was born to little for this life..... Forever with us ....
  • imageirishbaby0708:

    My lo is 3 1/2 and just broke 30 pounds which was huge.  He was the same weight as your Lo at 1. 

    imageLilypie Premature Baby tickers imageLilypie Premature Baby tickers
  • imagest.augbride:
    imageirishbaby
    10/17/2009 - Our Miracle came 10 weeks early. IF,2 MC and 1 Preemie we have our miracle.. Baby Hope 10 weeks 5days was taken from us on Dec 18, 2007. Forever with us and Forever missed. Triplets Lost baby A @ weeks, Lost Baby B at 6 weeks and lost baby Abigail at 14 weeks when she was born to little for this life..... Forever with us ....
  • imageirishbaby0708:
    imagest.augb
    imageLilypie Premature Baby tickers imageLilypie Premature Baby tickers
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