Thursday, October 02, 2008

Down Syndrome and Eating

Get It Down; 31 for 21

A little bit about Ds and eating... and then a HUGE brag on Miss E :)

"Do all kids with Ds have trouble eating? Brianna had a feeding tube and now Emma and Micah eat just bottles, is that what you expect with Ds?"

Although it's not considered unusual to have some feeding issues related to Down syndrome, it is NOT the norm, by any means! Here are a few of the different situations and I'm sure there are innumerable more! Feel free to add your own experiences in the comments! Everyone has their own story :)
  1. A child eats fine, from nursing or bottle to sippy cups, straws, baby food, table food... no different progression than any typical child (I believe this is the case for MOST kids with Ds)
  2. A child has trouble initially with gaining weight, usually due to a medical condition such as a heart defect and requires some sort of intervention- whether a tube through the nose for feedings (NG), a feeding tube in the stomach (Mic-Key button or G-tube), or maybe just a higher calorie formula or breast milk supplement. After the medical condition is cleared up often children are back on oral feeds and continue to progress, possibly a bit delayed, but similar to their typical peers.
  3. A child has a difficult time tolerating oral feeds or cannot suck. This is a more unusual difficulty, but it happens. These little ones generall have an NG or G-tube and go through therapy to learn to suck, chew, swallow, etc. and their liquids are often thickened to keep them from aspirating (having fluid go into their lungs). I'd venture to say that a HIGH MAJORITY of these problems through therapy and maturing are able to overcome most of their difficulties and are eventually on a regular diet as well.
  4. A child has never had exposure to feeding with anything but a bottle and doesn't accept any other foods orally. This is the case with a lot of children that have been in orphanages/institutionalized settings. There are so many varying degrees of this that it's hard to explain without overgeneralizing here. My two are even very different. Micah has great oral motor skills but a strong tongue protrusion (sticks it out when you try to put food in). He is beginning to eat when you put food into the side of his mouth and he's much like a child that was NOT in an institutional setting might be at a younger age. He just doesn't want the solids yet but has the skills and ability to eat purees as soon as he decides he WANTS to :) Emma, on the other hand, does NOT have the skills orally needed to eat food well. She doesn't move her tongue from side to side and her cheeks are "thick". She has a long way to go to learn to do those things and to strengthen and become more 'aware' of her mouth muscles and movement. She is beginning to like food, but it will take some time even after she wants it for her to be proficient at eating other than a bottle. Both kids have some weird fears of food and different cups especially so there will be a lot of 'overcoming' in the near future.
Of course there's MANY other situations, please feel free to comment and add your own!

Now for my EMMA BRAG! SHE ATE! Not just a lick of potato salad or a few spoonfulls of purees, but pieces of BREAD, and CHICKEN SALAD, and CHOCOLATE CHIP COOKIE, and NACHO CHEESE! She even took a BITE of my sandwich during lunch! Still a long way to go with learning to chew and move food, but WOW MISS EMMA'S EATING!!!!! I'm going to try to get some video later. We were at church and didn't have the camera ;)


  1. BIG congrats to Emma!! WOW- what progress.

    With us, Max would not eat after he was born. He would not latch on to breastfeed and would not take a bottle. That only lasted about 3 days then he could drink a bottle down (with some overflow out of his mouth). Finally 3 1/2 months later he figured out how to breastfeed. So I pumped that long until he got the hang of it then became a pro at it. Solid food wise- He is very picky (and he's 7 yrs now). I'm not sure if it's because he was my first child or because that is just him. I think I waited too long to let him really explore solid foods (a little over a year old) so maybe that's part of it.

  2. Yay Emma. No turning back now. Next comes the hamburgers and french fries!

    Sawyer nursed from day one but didn't have enough energy due to medical problems to get his calories from that. So he had an NG tube. At about 4 months we also started him on baby food via a spoon. At about 8 months, my oldest son said "Mom, Sawyer can eat cheerios". I said, No he cannot. He said, Yes he can, I just gave him some. And thus he started eating cheerios. My first born (typical) son never took a bottle. Went from getting liquids via breast feeding to straws. Our other 2 were adopted at 16 months and 18 months. They were already using cups. So I have 4 children and never used a bottle to speak of.


  3. Actually, I think the incidence of babies with DS having no desire to eat is kind of common. I've known an awful lot of kids over the years who were like this. It's just that years ago they didn't survive. Now, with a simple feeding tube, they do. Angela had a feeding tube until she was 3 1/2. It was initially put in after a nissen fundoplycation to stop severe reflux. However, after several bouts of aspiration pneumonia we later discovered she was also aspirating ALL liquids so she had to re-learn how to drink safely.

  4. WOW! I'm so excited for you. I know it's still a long was from totally eating but at least she wanted to try. I really thought you were going to say you were kidding by the time I read chocolate chip cookie....glad you didnt!
    Way to go Miss more for Mommy

  5. All right Miss E.! It's so exciting when they make progress isn't it?

  6. Way to go Emma!

    There is a big correlation between the ability to sit up independently and the ability to take in "solid" food (anything other than liquid). With typical kids, it so happens that they learn to sit about the same time baby food or table food is introduced. With the delayed development, many babies with Down syndrome don't yet have the muscle coordination to manipulate food in their mouths successfully. Frequently, waiting until a baby/child can sit will help with the eating.

    Oral motor skills and strength play a HUGE part in eating difficulties. Normalized eating patterns are directly correlated to good articulation down the road. The stronger the jaw, the more retracted the tongue, the better lip closure, then the better the speech is. It certainly is possible to have clear speech without oral feeding, but it takes a lot of work for most kids.

  7. Oh, this Mommie has tears of joy for you! Go Emma!

  8. well, that's just AWESOME!!! go EMMA!!! :)

  9. Did you find out if the WM brand of Ensure has the top for a nipple? I got asked that questions today by a friend from church. I giggled a little and told her I would find out! :)

  10. When you wrote of Emma's sampling potato salad a couple of days ago, I predicted that her menu would rapidly increase - but I NEVER would have foreseen this marvelous progress!

    How wonderful for Emma - not only is she starting to eat more normally, but she's not only willing, but actually interested in sampling a variety of foods!

    Thanks for helping me end my trying day with a smile (tanking Wachovia stock, plus a very sick kitty - at the vet's all last night and most of today, but finally better). It's great to learn such wonderful news!

    Best wishes,
    Susan in Ky
    Cousin to two from Ukraine (and nurse to a convalescent cat)

  11. Do you think that oral sensory issues can also play a part in Micah and Emma's feeding problems? I know that oral sensitivity due to lack of stimulation (proper feeding) can occur in institutionized kids as well. Do they mind if you brush their teeth and get into their mouths in other ways? Also, would specialized feeding therapy help them (although Emma seems to be progressing on her own!)? I know that the oral movements involved in eating solids are associated with speech development. Not like you have enough to do:)

  12. Way to go Emma!!!! Jonathan had a fededing tube fro 3 yrs. and then had it out for41/2 yrs. He just recently got another MIckey button. Not because he has eating issues but because he has trouble gaining weight and keeping it on. In June he was he is 50pd. He gets 4 cans of Pedisure pumped through in the night. Also because of his low weight he couldn't walk fast or run, now he is starting to be more active, we still have a long way to go. So, happy Miss Emma is eating!!!!

  13. Well, Potato salad as her first real food is a first. Remember David's was pizza crust. So one of us will set her a place at the Thanksgiving table Ha! Love Mom