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

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  1. #1

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

    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.

    Join us for free on the CDH Forums at http://www.cdhboards.org/

    Forums Facebook App - https://www.facebook.com/cdhsupport/app_189116767802011

    All forum rules of courteous behavior apply and will be enforced if necessary.
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects. Founder and President of CHERUBS.

  2. #2
    Looking forward to it. This is an awesome idea and a great service to parents, Dawn!

  3. #3
    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?
    Felecia Marie Woodruff- CHERUBS Volunteer
    Pennsylvania State Representative, Awareness Committee Leader, Parent Advisory Board Member

    Daughter, Hayden, DOB October 8th, 2009. CHERUB SURVIVOR son, Bryson, DOB July 30th, 2012 born at The Children's Hospital of Philadelphia.
    21 Days ECMO, 6 Days Oscillator Ventilator, Day 32 CDH Surgery, Day 35 Got to hold him for the 1st time, 25 Days Conventional Ventilator plus 21 Days while on ECMO, 4 Days CPAP, 17 Days Nasal Cannulas, Day 90 Came Home from the NICU
    Bryson's Facebook page: www.facebook.com/brysonsbattleprayerpage
    My Facebook page: https://www.facebook.com/felecia.woodruff
    Email: fwoodruff@cherubs-cdh.org | awareness@cherubs-cdh.org

  4. #4
    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!

  5. #5
    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!

  6. #6
    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.
    Felecia Marie Woodruff- CHERUBS Volunteer
    Pennsylvania State Representative, Awareness Committee Leader, Parent Advisory Board Member

    Daughter, Hayden, DOB October 8th, 2009. CHERUB SURVIVOR son, Bryson, DOB July 30th, 2012 born at The Children's Hospital of Philadelphia.
    21 Days ECMO, 6 Days Oscillator Ventilator, Day 32 CDH Surgery, Day 35 Got to hold him for the 1st time, 25 Days Conventional Ventilator plus 21 Days while on ECMO, 4 Days CPAP, 17 Days Nasal Cannulas, Day 90 Came Home from the NICU
    Bryson's Facebook page: www.facebook.com/brysonsbattleprayerpage
    My Facebook page: https://www.facebook.com/felecia.woodruff
    Email: fwoodruff@cherubs-cdh.org | awareness@cherubs-cdh.org

  7. #7
    Hi Brad,
    My CDH survivor, Braden is 5 (born 3/13/0. 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.
    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 http://i291.photobucket.com/albums/l...bon-braden.jpg Braden's video http://www.onetruemedia.com/shared?p...edium=text_url

  8. #8
    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!

  9. #9
    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.

  10. #10
    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!!!

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