Sunday, May 15, 2011

Development Update: Feeding


This is, by far, the most frustrating area with Nate.  At 28 months old we are feeding him like a 5 month old.  Feeding issues are common with Down Syndrome, but this seems to be far beyond the common issues seen.  For many months we tried to feed Nate simple foods like yogurt, applesauce and pureed foods.  At first, with very smooth foods, it went fine.  But as we started to introduce more texture (like mashed banana or yogurt with rice cereal), the challenges began.  Nate.would.SCREAM.  It was awful!

We tested him for sensory issues, but that is not the problem - in fact, he loves feeling all different kinds of textures - his favorite books are "touch and feel".  We also did a swallow study where they died his food and watched it go down through x-ray cameras.  Nothing was found there.  So, we needed to assume that this was a battle of the wills and he was capable of handling the food we gave him.  So, we started pushing harder.  Just enduring his screaming and crocodile tears.  It broke my heart and became a very difficult way to start each day.  Cody began begging me to not feed him. 

A couple of months ago, I'd had it!  He was losing weight and I had lost all patience.  So, I started feeding him smoothies exclusively.  We both needed a break.  Peace was restored in our home and I had a peace of mind knowing Nate was getting everything he needed in my blended concoctions (my favorite: banana, avocado, mango, almond butter, rice cereal and almond milk).  So, we gave him 4 or 5 smoothies a day and still did bottles at nap and bed time.  

Then, in the beginning of April, we went to our ENT for Nate to have tubes put in his ears and adenoids out.  She asked about his congestion and the rattling sounds coming from his chest.  I told her it's pretty much his normal and she asked if he'd ever been tested for reflux.  NO.  hmmmm, really?  He's never spit up or thrown up, but the doc explained that he could have silent reflux and not actually show any symptoms.  Great!

While he was under during his procedures, she suctioned gunk out of his lungs and was able to definitively say that he does have reflux.  Are you kidding me?  He's over 2 years old and I'm just now learning this?  What?!  

Our ENT recommended we get another swallow study done at the Children's Hospital.  Our previous study had been done at our local hospital which does not specialize in pediatrics - lesson learned!  This test showed something very clearly.  Nate was able to swallow fluids (juice) and thicker liquids (smoothie) just fine, but when the food was thickened slightly (yogurt with rice cereal - just a little pasty) he had problems.  The first swallow of a bite went down, but the leftovers just swashed around in his nasal passages and throat.  So, if we were to add another bite to that scenario, it's clear why he would begin to panic.  He felt like he was suffocating!  The speech therapist conducting the test said it's "muscular dis-coordination" and that it SHOULD resolve eventually.

So, where are we now?  Still mostly doing smoothies and bottles and a little overwhelmed.  We have gone all the way back to the beginning of feeding him baby food.  We'll very gradually thicken his food and if he cries at all, we are supposed to pull back - just let him lead us.

This could be a.very.long.road!

 If you have any ideas or resources, we'd be open!

Next update:  Communication


  1. Pretty much in the same boat over here. Totally sucks, I know. Maybe they will just get it and maybe your speech therapist is right-SHOULD resolve?? I hope!!

  2. I am so sorry! I can't believe it took 2 years to uncover the issue. We have aspiration issues here, so although different, still annoying. Having to just wait until they figure out how to swallow correctly is not easy.

    Keep your head up and know that we are all here for you! Oh, and I'd love to get the details on how you make that smoothie. I'm wanting to try to make some for Sweet Pea since she doesn't eat many foods.

  3. Danielle,
    This sounds soooo frustrating!!!
    Can they treat the reflux?
    Love the chalk pic!

  4. I loved his picture playing with chalk! I am so glad he has a diagnosis - reflux, not the most fun thing it the world but it can get better. My dumpling has been on medication for years. Good luck and I will keep you in my prayers.
    Take care,

  5. I feel your pain- I haven't posted about it yet- I'm still working through it- but at 14 months we found out Abby had a duodenal stenosis, which was repaired last year in May. We didn't know up until then (and a swallow study) that she needed her liquids thickened. We just this month went back to the GI b/c she still throws up. We got a couple of new dx- that she has a gastric emptying delay and that is contributing to her reflux- which is not controlled by prevacid and that her intestinal anatomy is a little different. One thing that did get fixed was how we were giving the prevacid. We finally found a way to get the melttab in her that got her the whole pill, didn't have her chomping on it (they said it makes it unpredictable) and didn't involve crying. We also upped the dose- I'm hopeful if she doesn't throw up before friday we can stop there rather than moving on to the next step in the process in controling the reflux. Have you guys had an Upper GI done as well as a swallow study? If not- it looks lower in the GI tract- it's what has helped us with a number of these issues.

  6. Hi
    My name is Jenna and I came across your site. Nate and Cody are cute, handsome, and adoreble boys. Nate is an inspirational hero. I was born with a rare life threatening disease, and I love it when people sign my guestbook.