CHERUBS Medical Expert Series: CDH & Feeding Issues (Dec 2-9, 2013)

[Dawn Torrence Ireland]

Brad Myers, MA, OTR/L Occupational Therapist will guest speak and answer your questions about feeding issues on CHERUBS CDH Family Forums during December 2nd through 9th.

Brad Myers, MA, OTR/L is the Clinical Specialist for Carolina Therapy Services and Trinity Rehabilitation in North Carolina. He has been an Occupational Therapist for 13 years with experience in pediatrics, outpatient, and skilled nursing settings. Brad is the Legal/Legislative Chair for the North Carolina Occupational Therapy Association and lives in Raleigh with his wife, Kellie and son, Carter.

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[BradMyers]

Looking forward to it. This is an awesome idea and a great service to parents, Dawn!

[FeleciaWoodruff]

Hello Brad! My 16 month old Bryson is having issues gaining weight but eats EVERYTHING and anything all day long. He always eats like he hasn't eaten at all. I've already added extra calories to his foods. He is currently getting more lab work done by GI to see if it's something to do with his body not absorbing the nutrients. He is on the toddler formula but will not drink pedisure seems like that and peas are the only things that he doesn't like. But he does seem to keep some food stuffed in his cheeks. It's like he's a chipmunk and saving it for later. hahahaaaa Does that mean anything?

[BradMyers]

Hi everyone! Huge thanks to Cherubs and Dawn for asking me to do this. First a little background above and beyond the bio that has already been posted. My son, Carter, was born at Duke with a LCDH in 2008. Long story short, he had a major defect with almost all of his abdominal organs herniated into his chest. He endured 18 days of ECMO, numerous surgeries, ultrasounds, etc and we were unable to hold him until he was 6 weeks old. When he finally had his surgery to repair his hernia, his doctors found 2 relatively normal lungs squeezed among his abdominal contents. To this day, I get teary eyed whenever I think about that.

Eventually, we came to the realization that Carter was going to survive, but was still unable to go home. Weeks turned into months and still no date set to return home. This was mostly due to significant feeding issues and severe reflux. Carter would take nothing.... ZERO.... by mouth and was hypersensitive to all sensory input due to the CDH, pulmonary hypertension, and isolation he experienced in the NICU. During this time, my wife and I found TONS of information online about how to keep CDH kids alive. But very little about how they are going to LIVE once their medical status has stabilized.

What complicates this issue is the fact that I am an Occupational Therapist. I quickly surrounded myself with articles, research, and colleagues with experience in feeding issues. During this time, I learned enough to be dangerous about feeding issues. Am I an expert? I'm not sure that there is a such thing because every one of these kids is completely different. But I hope that my experience will help other families who are enduring this stage in the CDH rollercoaster, which is ALMOST as stressful as the initial hospital/surgical process.

How's Carter today? He pulled out his NG tube shortly before his 1st birthday and we never put it back in. He is now a perfectly normal 5 year old - that somedays eats his mother and I out of house and home. He still has the occasional feeding issue and it took YEARS to overcome gagging, vomiting, and severe food preferences. It took a lot of therapy from a lot of great people - not to mention a lot of patience - but I think he has finally conquered the feeding AND the CDH monster. Not a day goes by that I don't count my blessings.

Finally, a quick word about any advice I share with you guys. It is not meant to take the place of sound medical or therapeutic advice. I only want to direct you to people that can help you. If your child will not eat normally, there are a million different reasons that could explain why. Please make sure you seek the advise of your medical team and, most importantly, a great feeding and therapy team, including Occupational, Speech, and/or Physical Therapy. After this week, feel free to contact me at ecuotr@yahoo.com or www.twitter.com/bradmyersotrl with anything else I can help with. Looking forward to meeting everyone!

[BradMyers]

Hi Felecia-
I had 2 thoughts when reading your post: a) you may need to add calories to his food and b) you need to consult with the medical team to make sure his calories are being absorbed correctly. As I continued reading your post, it is clear that you have already gotten both of my suggestions under your belt. My son's doctors always told us that CDH kids burn calories faster than normal kids because they have to work harder to breathe. The more severe the pulmonary hypoplasia (little lungs) and more medical issues, may make this worse. If Bryson is eating well, that is GREAT news. Now it's just time to find out where all of those calories are going. As far as storing food in his cheeks, I'm not sure that means anything, but I would definitely make sure that it's not due to any swallowing or oral motility problems. Your Occupational or Speech Therapist would be able to tell you that, if they haven't already. Good luck!

[FeleciaWoodruff]

Thanks so much! We do have him on a high calorie diet and are waiting to hear back from GI to basically find out where those calories are going. He is always on the move now so it could just be he's burning them off too quickly.

[KarlaHolt]

Hi Brad,
My CDH survivor, Braden is 5 (born 3/13/08). He endured a year of feeding therapy from ages 1.5 to 2.5. Lots of gagging and texture issues but is now eating us out of house and home. One issue still remains…he's only eating the same 4 or five foods. Am I destined to be always prepare a separate meal for him? Any tips on how to get him to at least try or taste new foods? He won't go near anything that isn't familiar and even rejects his favorites if I buy a different brand. I've received a lot of criticism for being the short order cook. He's tiny but is growing and gaining weight nicely on his curve.

[PatriciaH]

Hi Brad,

My grand daughter is 3 1/2 and will not eat meat no matter how small we dice it or chop it she will spit it out. She also does not like vegetables. She prefers fruit and pasta with Alfredo sauce. Any suggestions on how to get her to try other things without it being a fight to the finish. Her mom has said things like if you don't try it you have to go to bed and she says ok and gets down and goes to bed. Mom has tried making her sit at the table until she tries it and she will sit there until she falls asleep. I personally work on the theory of i will feed her what she will eat. I didn't start making my kids start trying a bite if everything until they were in school. Any suggestions would be helpful.

[Chris and TracyMeats]

Hi Brad! Thank you for answering these questions!

My son is 9 and we still have the gagging episodes on occasion, do you think this is just from his years of struggling to eat or should we take him back to a GI doctor? I have always just put it back on he doesn't like the texture of something and that is his way of dealing with it or eating to fast. He no longer takes reflux meds. Does your son still take reflux meds?

[BradMyers]

Hi Karla- My son has 2 cousins that are 7 and 4. I believe that a lot of food preference issues are just normal for kids this age. In fact, Carter eats a much more diverse diet than his cousins and many of the kids in his pre-K. So, I think some of that will just get better with age. Any lingering food textures resulting from oral hypersensitivity will hopefully just resolve themselves with time. What is most important, however, is to let the child have positive experiences with many different food textures. I hope you're not cursed to always preparing two separate meals forever. Maybe encourage him to try whatever the rest of the family is eating? Also, peer pressure has been a HUGE motivator for Carter. He eats many foods that he did not used to eat because he saw other kids eating them (ie: peanut butter). Then they stare at him in amazement when he eats broccoli! :)

[BradMyers]

Hi Patricia- The important phrase here is "fight to the finish". Kids are bound to prefer certain foods, but if they have a true aversion and sensory processing issue with certain textures or tastes, forcing them to eat things that they do not want is probably doing more harm than good - especially in a child that is 3 1/2.

I speak from personal experience. I hate stewed tomatoes. I always have and I always will. I have no problem with ketchup, tomato sauce, salsa, and many other tomato-based products, but I can't handle stewed tomatoes. Just thinking about them now is making me nauseous. When I was little, my mom would try to force me to eat things with diced tomatoes and, if given the choice, I also would have gladly gone to bed without eating them. No amount of hunger or threatening can make me eat stewed tomatoes- to this day. You may be the same way about a food of some kind (my wife is the same way with guacamole).

So, imagine this response applied to several different foods. Encourage the foods that she WILL eat. In time, her palate will diversify, but this will only be the result of POSITIVE experiences. Again, when she starts school, this peer pressure will also work wonders. Do not force her to eat things that she does not want or you may end up with an adult who is as neurotic as I am with tomatoes! Good luck!!! :)

[BradMyers]

Hi Tracy- Your name sounds familiar! :)

Carter occasionally gags if he eats too much or too fast, but I think that most kids do, also. It hasn't been that long ago that Carter would vomit if he ate too much, especially if he laughed/cried/coughed immediately afterwards. This seems to have improved and he is no longer on reflux meds.

I think that if you can identify certain foods and/or textures that cause him to gag, this may be your answer. If it's always gooey food, stringy meat, lumpy food, etc but he tolerates other textures, I'd be willing to chalk it up to being hypersensitive to food textures. However, I'm always a fan of keeping your medical team in the loop. If you ever have any questions or concerns about swallowing or motility, I would at least bring it up to the family physician. My wife and I are renowned for calling Carter's physicians with questions and concerns. I'm pretty sure we're the sole reason they implemented their 24 hour call line. Haha. Ah, the life of a CDH parent.

[BradMyers]

Wanted to share this with everyone. It's an article that I wrote about my experiences as a CDH parent and an Occupational Therapist. Feel free to share. Hope it's helpful.
https://www.dropbox.com/s/vktm3b7o4mq7ne9/Sensory%20Processing%20and%20Feeding%20in%20CDH%20 kidsPDF.pdf

[NeilRubenstein]

Thanks for doing this Brad. I don't have much a question as we are still trying to figure out what's going on with Brody. He's been home from the NICU for about 4 weeks...2 of those without his NG tube. It seems like his reflux was exacerbated by the increase in volume we started offering him because he was was getting hungry every hour. Brody is almost 3 months old. We literally today just upped his dose of zantac and he's seeing his surgeon on Friday. In the past 2 weeks, he went down from the 3 percentile in weight to 1 1/2 percentile. He is hungry and wants to eat but screams bloody murder with most bottles.

I just found out that I can mix his zantac with formula, so that should help me get him to actually swallow his medicine (as he hates it). I think his surgeon is going to want to increase his calories as well since he is on the small side. More TBD...

On another note, Aidan still has issues with overly creamy food. He loves mac and cheese but if it's overly creamy, it makes him get sick. Otherwise, he's an amazing eater...

Thanks again

[Megan Smith-Weedon]

I hate the thought of so many of our children having feeding issues, but yet it comforts me to know that we are not alone.

Alyssa is 9 years old and still has her g-tube. It's been a long, frustrating road. Alyssa too, wouldn't eat anything. She was hypersensitive to anything even near her face. We brought her home after 64 days in the NICU on a continuous drip NG feeding tube. I found out a couple years ago that they don't send kiddos home any longer on continuous drips because it causes long term feeding issues. NO KIDDING!!! I wish I knew back then what I know now and if that were the case, Alyssa probably still wouldn't have her g-tube.

Alyssa did 2 different Intensive Feeding Therapies. She was on the bottle for 2 weeks and the Developmental Pediatrician decided that the g-tube was the next course of action because Alyssa wasn't gaining weight. Once again I wish I would have known. She was drinking from a bottle for 2 weeks. We needed more time. But I didn't have anyone to tell me otherwise. I feel like I've failed as her advocate. She got her g-tube and Nissen at 7 months old. From there we went to night feeds, but she still wasn't hungry during the day.

In 2008 Alyssa did another Intensive Feeding Therapy. They discharged her at 6 weeks telling us that there was nothing they could do for her. The program was only 8 weeks long. That was very disheartening to hear Medical Professionals tell you that there was nothing they could do to help especially what seemed something as simple as eating. I regret letting her participate in this program due to the fact after those 6 weeks, Alyssa regressed. She refused to put anything in her mouth and she went in fully potty trained and 6 weeks later she was having frequent accidents.

We noticed a slight change in her feelings towards eating when she started school. I think the "peer pressure" helped. She saw everyone else eating and in order to "fit in" she would eat too. She ate very little but she ate none the less. That led us to bolus feeds to supplement throughout the day. She was doing this up until last year when she was in 3rd grade and because of the supplemental feedings, she didn't get to go out to recess with her friends because the doctors were so worried about calorie intake but I refused to put her on the pump over night. We've gone through 3 different GI doctors. All who have suggested that she wasn't getting enough calories. We had tried everything and I felt like our trial and error period had been exhausted.

As we did more and more research on our own, we've come to realize and believe that Alyssa's body for some reason isn't absorbing all the calories like it should be. The problem is, is that we can't seem to get anyone to hear us. They always come back to "needs more calories." They don't seem to take into account either that Alyssa's Dad is tall and lengthy and she's built just like him. We can't seem to get anyone to want to take a look at Alyssa from a cellular level.

We have a friend whose son was born perfectly healthy and is the same age and only about 5 lbs. heavier than Alyssa and no one has batted an eye at him.

With that said now that we've moved to Indians we see a new GI tomorrow.

[KarlaHolt]

Braden eats broccoli! That's my problem…I do offer him whatever everyone else is eating and he won't touch it! I'd basically have to shove it down his throat.

[BradMyers]

Neil- So glad Brody is doing well. When I first saw on FB that he had been diagnosed with CDH, it was like someone punched me in the gut. Sounds like reflux is the culprit to Brody's discomfort when feeding. If they can get his meds figured out and boost his calories/decrease his volume, hopefully this will do the trick. Once he's able to tolerate cereal and more solid foods, kids don't have as many issues with reflex because the food is solid enough to stay in the stomach without bubbling up into the esophagus. I know it's frustrating, but sounds like you guys are on the right track.

[BradMyers]

Megan- I know a family here in NC that was just sent home with continuous drip feed, so it is definitely still happening. I'm sure there's some kind of medical explanation for this, but it doesn't do the kids any favors regarding feeding. Imagine if you were constantly sipping on a thick milkshake all day long - and you HAD to do it. You probably wouldn't eat anything either. I'm a much bigger fan of bolus feeds, if at all possible, but sometimes the child's reflux may not allow this.

Have you guys tried an appetite stimulant with Alyssa? It sounds like she's old enough to understand the concept of feeding and has the peer pressure there as motivation, also. If the problem is that she's just not hungry, talk to your doctor about an appetite stimulant. When Carter's doctors started him on Periactin, we saw a HUGE increase in his willingness to eat, because he was finally HUNGRY!

A caution about appetite stimulant, however. They should NOT be used if the child has been diagnosed with swallowing dysfunction or severe sensory processing disorders. Appetite stimulants should only be used if the child doesn't WANT to eat or doesn't understand why he/she should. If the child actually CAN'T eat, increasing appetite is just torturing him/her. Best of luck!

[BradMyers]

Karla- Better to stay the course and just let him eat whatever he will then force him to eat anything he doesn't want to. If he has a true aversion, force feeding him will only create a life long hatred of that food (see my thoughts regarding stewed tomatoes in a previous post). For a while, Carter would only eat spaghetti and pasta. We'd send him to school with spaghetti. every. single. day. Eventually, we started trying to branch out and send sandwiches, chicken nuggets, etc. His teachers took us aside one day and said "Listen, just send the spaghetti. It's what he likes and we don't have to force him to eat it". I should have bought stock in ragu and Chef Boyardee.

[BradMyers]

Carter's YouTube video: http://www.youtube.com/watch?v=HkBQLTSiFTs&feature=youtube_gdata

[Megan Smith-Weedon]

Alyssa was prescribed Periactin also. We used it for about a year and as she started to grow more we noticed that it was causing her mood swings. So the Dr. took her off of it. We've increased her Protein and use Duo Cal powder to add extra calories. She won't drink or eat thick things. She won't do milk shakes or peanut butter. She's a big fan of Poultry and eggs though! We saw the Gastro at Riley Children's in Carmel IN this afteroon and He looked at her weight and I had told him that we hadn't done night feeds or bolus in months because Alyssa was starting to eat more. Which I was happy with because I found night feeds and bolus to be counter productive in Alyssa's case. Yes she was getting the calories but she was becoming dependent on her tube again.

The Gastro today, looked her over and said that since she has gained 2 lbs in the 3 weeks we've been down here that I am to weigh her once a week. If there is a loss then we talk about night feeds, if she continues to gain when we go back in 4 months we can discuss g-tube removal!!!!

[BradMyers]

I love the phrase "G-tube removal"!!!!!!! Hoping for the best for you guys!!!

[jtruscott]

man i am sorry i missed this! lots of great advice that i will read over as we still have feeding issues with madeline. about once a week mmmy still gets puked on :P

[BradMyers]

Carter puked every time we fed him. Every. Single. Time. It seemed like he would puke up everything we pumped into him with the NG tube, but he still gained weight, so something must have been staying down. Don't know how old Madeline is, but Carter had puking issues until recently (he's 5 years old). As long as she is gaining weight and the puking isn't causing any aversion to food, I wouldn't worry about it too much - except for the frequent laundry. She will probably grow out of it.

[jtruscott]

Madelien is 15 months (yesteday!). She was a champion puker until her NG got pulled at 11 months. like exorcist style. and as we were feeding her solids, textures would send her off.

She still has some texture issues, and she isn't very big, but she is growing. And she loves to eat, most days anyway. Oddly, even as she is gagging on something, she doesn't mind us sticking our fingers in her mouth to get it out, weirdo baby :P She still is likely to vomit if she gags on food, or if she has a cough. a well, the dog likes it.

[Angel Ratliff]

Hello Brad! I have a 4 month old cdh baby girl. Since having her diafraghmatic hernia repaired she has gone back in to surgery and had a hianal hernia reparied, her intestines once again pushed back down into the stomach area, a nissen surgery and a g-tube placed . I noticed a few nights ago that she has began gagging in her sleep and when she is awake. I was wondering if you possible had any insight to that. I was thinking it could possible be from her Nissen surgery but im just not sure. Any advice or insight would help please.