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

  1. #11
    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!!!

  2. #12
    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.

  3. #13
    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.

  4. #14
    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
    Neil Rubenstein has been married since 2003 to his wife, Amy. He has two CDH survivors. His 1st CDH survivor (Aidan) was born in June 2010 after being diagnosed at 37 weeks. Aidan had surgery to repair his hernia when he was 4 days old. His surgeon discovered at that time that Aidan had no diaphragm at all, all his organs were in his chest (except for his liver), his heart had been pushed to the left side by his stomach, and he had two spleens (apparently not uncommon). Even with all this, Aidan did not need ECMO and was only in the NICU for 29 days. Aidan had a follow-up procedure at 13 months old to close up an abdominal hernia that his surgeon created to give his organs room to grow once she moved them all back to their proper location in his abdomen. His second CDH survivor was born on September 10. Brody had his hernia repair at 3 days old. All of Brody's organs except his liver and stomach were in his chest and his hernia was repaired using a Gortex patch. He will need the same follow-up surgery at around 12 months as Aidan.

  5. #15
    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.

    Alyssa~ 7/19/2004; LCDH- ECMO 11 days (VV 5 days)- (VA 6 days)-To date, the only Double ECMO Case at Helen DeVos Children's Hospital, Vent 19 days- Osc. Vent 1 day- Jet Vent 1 day- Oxygen 20 days. 64 days in the NICU, came home on NG tube, continuous drip feeds. 02/28/2005 Fundoplication and G-tube placed.

  6. #16
    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.
    Mom to Brooke-3/22/04- Braden-3/13/08-RCDH diagnosed at birth- treated at CHOP- CDH repair at 1 day old- home on day 12- Orchiopexy for undescended testicle (4/13/09)- Myringotomy with tubes bilateral (ear tube surgery-7/6/10)
    North Carolina State Co-Rep Braden's video

  7. #17
    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.

  8. #18
    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!

  9. #19
    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.

  10. #20

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