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Thursday, January 19, 2012

POPSICLE Pediatric Feeding Disturbances Conference-Part 1

This past weekend I had the opportunity to attend the 2012 Pediatric Feeding Disturbances Conference put on by POPSICLE Center. I thought the title, albeit descriptive & accurate, was kind of funny. J The conference consisted of several speakers from different areas of expertise who deal with children who have feeding difficulties. Overall, I thought it was very well put together, but I wish it could have been stretched out over 2 days to allow more time for the speakers to answer questions afterward and make it through their whole presentations without running out of time. There was SO much valuable information and I’m still trying to process it all. Because there was so much information, this will get very long so I’m going to break it into parts and since the point of going was for me to better understand Raya, I will probably be relating a lot of it to her.
I should start by explaining what POPSICLE Center is. POPSICLE stands for Parent Organized Partnerships Supporting Infants & Children Learning to Eat. (long acronym for a long name!) It was started 5 years ago by a group of mothers who had all had frustrating experiences with the medical care of their tube-fed children. They created POPSICLE with the hope of bringing together parents and medical professionals from each of the professions that deal with feeding difficulties and working towards a more collaborative method of treating these children. Their website (which was recently redesigned) is www.popsicle.org.
The first speaker was Dr. Colin Rudolph, who is on the board of directors for POPSICLE and is a pediatric gastroenterologist. He’s had a long and prestigious career which I won’t detail here. J If you want to read about him, here is his profile. The title of his presentation was “When to refer an infant or child with feeding difficulties.” Okay, so since I typed this in Word and it was 5 pages long with .5" margins, I decided to do a bullet list with the main points for anybody who doesn't have the time or patience to read my very long dissertation. :) Here it is:
  • 25%-45% of children with normal development will experience feeding difficulties while 33% to 80% of children with developmental delays or chronic disease will experience feeding difficulties
  • A baby or child who has been well and then has acute changes in his/her feeding habits needs to be evaluated immediately to determine the cause of the sudden change.
  • Feeding disorders present as inadequate growth due to inadequate intake, inefficient feeding such as prolonged time required for each meal, delayed progression of normal feeding skills, and recurrent respiratory disease due to aspiration of food/liquid
  • Causes of inadequate/inefficient calorie intake are inadequate sucking & swallowing skills, learned aversion due to pain or discomfort following feeds, decreased appetite drive, and disordered parent-child interaction
  • POPSICLE has just released a new interactive online screening tool to aid in the early identification of feedig difficulties
  • Feeding a baby/child should not be a miserable experience, and if it is, then something is wrong
  • Tube feeding can help kids with severe FTT and malnutrition make great strides developmentally but it won't help their appetite drive
  • Lack of skills can limit the ability to ingest normal amounts; If it takes a baby less than 5 minutes or longer than 30 minutes to finish a feeding, he or she may be demonstrating lack of adequate suck/swallow skills
  • Your mind is ready to learn certain things at certain times: there are critical sensitive periods of development that, when missed, can make acquiring those feeding skills at a later time much more difficult
According to Dr. Rudolph,
·       25% to 45% of children with normal development will experience feeding difficulties
·       33% to 80% of children with developmental delays or chronic disease will experience feeding difficulties
Wow. Feeding difficulties are more common than I thought. Although looking back, 3 out of my 4 children have had feeding difficulties at some point in their infancy and toddlerhood. 2 of them still struggle and the third is just naturally really skinny despite the massive amounts of food she consumes. J
According to Dr. Rudolph, feeding problems either present as acute or chronic. A baby or child who has been well and then has acute changes in his/her feeding habits needs to be evaluated immediately. In other words, if your child has been eating well and without difficulty and then suddenly starts refusing feeds, vomiting, screaming or crying during or after a feed, becomes lethargic during a feed, chokes or turns blue during a feed, then there is something wrong and medical attention is needed in order to find out what the cause of the sudden changes is. Examples he gave of possible causes of acute feeding problems are neurologic (brain injury, meningitis, stroke, etc.), infection (UTI, ear infection, hepatitis, gastroenteritis, esophagitis, etc.), cardiopulmonary (heart failure, pneumonia, etc.), metabolic (kidney failure, hypercalcemia, etc.), and other things such as ingesting a foreign body like a coin. Don’t be freaked out by the list, I think he was aiming the specifics of it more towards the other physicians in the room. J I think his point was that if there is a sudden change, the possibility of a previously undiagnosed illness or some type of infection needs to be investigated. That could be as simple as all of a sudden, my baby is refusing to drink her bottle so I take her to the pediatrician and find out that she has strep throat. I wouldn’t want to drink a bottle if I had strep throat either. It’s an acute feeding problem and not cause for long-term concern (unless the food refusal continues after the illness has cleared up completely).
However, many feeding problems are chronic in nature, such as (in our case) a baby who has moderate to severe reflux from birth and over time takes in less and less calories due to discomfort and pain associated with eating, reflux and vomiting. He stated that feeding disorders present as inadequate growth due to inadequate intake (like Raya), inefficient feeding such as prolonged time required for each meal (like Raya), delayed progression of normal feeding skills (like Raya), and recurrent respiratory disease due to aspiration of food and liquid (thankfully NOT like Raya). {as a side note, there were many times during the conference when I was doing a mental checklist in my head as the presenters were talking about different things. We definitely belonged at a conference for feeding disturbances J} These chronic types of feeding problems are beyond the scope of a pediatrician and the child should be referred to a team of specialists depending on what the specific problems are.
Often, this starts with a referral to a GI doctor to determine a cause for the feeding problem. For us, the referral to the GI doctor led to hospitalization for FTT (failure to thrive) where Raya underwent testing to rule out anatomical abnormalities (pyloric stenosis, hiatal hernia, malrotation, etc.). The determination was made that a feeding tube was necessary so that was placed and care continued at home. A couple months down the road, the GI doctor made a referral to a neurologist to investigate concerns in that area. A few months later, we were also referred to a geneticist (who we will be seeing again soon) and a cardiologist. We were also sent out of state to be evaluated by a motility specialist. All of these specialists have become part of Raya’s medical team (although thankfully we don’t need to see the cardiologist anymore) and in addition to the physicians, we have added 2 feeding therapists, a physical therapist, and an occupational therapist. Without good coordination between all of these people (which ultimately goes through me as the primary caregiver), it would be a case of “too many cooks spoil the broth”. Other specialists involved may include a pulmonologist, dietitian, lactation specialist, and I'm sure there are others that could be included as well.
{If the area you live in does not have an all-inclusive clinic where all of these specialists work together and take a team approach in caring for their patients, then YOU can and should create your own health care team for your child. View this as a collaborative effort between yourself as the primary caregiver/care coordinator and the members of your child's healthcare team.} I've been thinking recently (and off & on throughout this whole process) that it makes no sense to me that all of our specialists send copies of reports from every visit back to our pediatrician, who we see maybe once or twice a year now, but they don't send them to me. As the person who is coordinating ALL of Raya's healthcare needs, WHY DO I NOT HAVE COPIES OF THOSE REPORTS?? I have a few, which I have often had to call and ask for when we've needed to prove this or that to an insurance company, etc. but unless I ask, I don't get them.
He talked about the different causes of inadequate or inefficient calorie intake. In our case, they had a domino effect. First was the inadequate sucking & swallowing skills. Raya wasn’t the worst nurser I’ve had out of my 4 babies (that prize goes to kid #1) but she was slow and inefficient and didn’t have much endurance. She coughed a lot, had loud breathing sounds while she was eating, didn’t have a very strong and consistent rhythm to her sucking pattern. The second cause for Raya was learned aversion due to pain or discomfort following feeds. Instead of making her feel better when she was hungry, eating (and the aftermath of eating) was painful and uncomfortable for her. When you are constantly spitting up acidic stomach contents, having gut-wrenching vomiting and retching, and your belly is full of air because you swallow too much of it when you eat and then can’t seem to burp, WHY IN THE WORLD WOULD YOU WANT TO KEEP EATING?!? It makes perfect sense to me, and at the same time, it makes me sad that her problems were beyond my ability to control. Following the learned aversion to eating was the decreased appetite drive. This was discussed in more than one of the presentations. Dr. Rudolph had a slide with a diagram of everything within the brain & gut that influences appetite as well as environmental factors. Things like steroids and stimulants (meds that some medically complex kids may be on), the hormone Ghrelin (which is supposed to increase before & decrease after meals), and other hormones can stimulate appetite. Nerves (like the vagus nerve) can either stimulate or inhibit appetite. He also stated that environmental factors like neglect and maternal depression can affect appetite. I never knew that appetite was such a complex function!
Dr. Rudolph introduced a new interactive online tool that can be used to help evaluate possible feeding difficulties in children and in turn can expedite the process of investigating the causes. It has taken 3 years of work by the POPSICLE Center’s board of directors to come up with this tool. The “Early Identification Screening Tool”, which can be found here, allows parents or caregivers to answer a series of age-specific questions about their child’s feeding habits. By answering the questions, parents can get a better idea of whether they should seek intervention for their child or not. This tool is really a great resource for parents. A recurring thought that ran through my head all throughout this conference was “If only I had known that when Kaida was a baby…” and that holds true for this tool. I really REALLY wish that we had been referred to a GI doctor when Kaida was a baby for several reasons, which I will come back to later.
ANY and EVERY parent of a baby or toddler who finds themselves feeling frustrated with mealtimes, exhausted by the efforts it takes to feed their child, or concerned about the lack of normal progression in what their child is willing or able to eat SHOULD fill out this questionnaire. This tool makes it easier for parents and physicians to actually know what they should be talking about. Many parents, especially first-time parents who are unfamiliar with what normal feeding and development should look like, often don't realize that something is not right with the way their baby is eating. Babies should be driven by hunger cues. When they are hungry, they should want to eat. When they are offered food, if their body doesn’t tell them that their stomach is full, their natural instincts should guide them to accept the food. If a baby is consistently avoiding breastfeeding or the bottle (turning away from it, having difficulty latching on, eating a little and then stopping and refusing more) then this could be a sign of a problem. The POPSICLE screening tool provides an objective insight into whether or not there is cause for concern and reason to refer to a specialist. One of the great things about the tool is that a parent can go online, complete the questionnaire, print it out, and bring it to their pediatrician to discuss.
One of the most interesting questions on the POPSICLE screening tool was, “Do you enjoy feeding time with your baby/child?” It seems like such a simple, common sense question, but it really struck me. Feeding a baby or child should not be a miserable experience, and if it is, then there is something wrong. Just as an example, when our oldest daughter was born, for whatever reason, she wouldn’t suck on anything. She couldn’t stay awake for anything and really didn’t seem to care if she ate or not. When she did try to nurse, she couldn’t figure out how to latch on no matter what I did. She couldn’t suck on a pacifier very well so she had no interest in doing that either. It took her a full month to learn how to nurse, during which time I was pumping and feeding her from a bottle. She would wake up hungry and I’d do my best to keep her happy while I pumped a bottle, then it would take her 45 minutes just to drink the bottle. It was a miserable month for me. We had seen a lactation specialist briefly at the hospital but all that came of it was the opinion that we should either switch to formula or rent a pump once we got home. Ongoing meetings with a lactation specialist after we had gotten home may have really helped the process of teaching her how to nurse (and teaching me how to nurse her) to go faster and not be as difficult. This is just one example of a feeding problem. Thankfully when she was about 4 weeks old, she finally figured things out and I had the added bonus of a breastfed baby who would also willingly take a bottle from whoever would feed her one. Those were the days. J
He talked about the impact that parent-child interactions and the temperament of the parents have on the child. One thing that he talked about that struck me a little was a slide with the title, “Disordered parent-child interactions: ‘Feeding Traps’.” Oh boy. Time for some self-evaluation. The first item on the list was “Reinforced negative behaviors” such as force feeding (tried a couple times, it didn’t work & resulted in large vomit messes, never tried it again), food hunts (not quite sure what he meant by that…), and short-order cooking (eek, definitely have done this one with Kaida, mental note: STOP J). We have definitely toughened up on her recently and I don’t feel like we’ve ever gone overboard, but sometimes we eat something for dinner that I know she doesn’t like so rather than fight with her to get her to eat it, we let her have a sandwich instead. I don’t think that’s a horrible thing to do, especially since she does have some ongoing GI issues herself, but we are getting better at discerning when she’s not eating because her tummy hurts and when she’s not eating because she’d rather have something else. So yeah, short-order cooking (i.e. making something else for the kid who doesn’t want to eat what you made for everybody else) is not good.
The next “Feeding Trap” he talked about was “Failure to set appropriate limits”. This includes things like allowing a child to graze all day long instead of having set meal & snack times, allowing the child to eat wherever they want to instead of at the table, and employing excessive distractions in order to get a child to eat such as having to turn the TV on in order to get the child to eat. The mention of “grazing” was a good reminder for me because that’s a pattern we’ve gotten into a little bit with Raya. When you go from your child not eating ANYTHING to all of a sudden asking for food all day long, it seems totally wrong to deny them food when they ask for it, but being a successful oral eater also means eating at scheduled times throughout the day so we’re working on that too.
The third “Feeding Trap” was “Not attending to positive behaviors”. This includes positive reinforcement of a job well-done and also paying attention to and following the child’s cues. This one made me chuckle a little because whenever Raya eats anything, there’s always at least one of her siblings saying, “Oh, great job, Raya! Mommy, did you see what Raya ate?!” It’s cute. Then on the other hand, they’re also known to giggle when she does naughty things like spit food out just to be funny or throw food on the floor. That would be reinforcement of negative behaviors…
The last thing on the list of feeding traps was “Projecting parental food preferences”. He also called it the “yuck effect,” meaning that if you eat something that you don’t like and then make a yuck face and tell your child how gross it is, of COURSE they’re not going to want to try it. Be positive about food and the child will have an easier time looking positively at food too.
The next several slides had to do with behavioral issues. The questions on the POPSICLE screening tool that related to behavior were “Do you often have to do anything special to help your baby eat?” and “Does your baby/child do any of the following when you feed him/her: refuses to eat, does not swallow, turns away from the breast/bottle/cup, gags/coughs/chokes, arches his/her body, cries/tantrums, vomits after eating” Once again, I found myself mentally checking off everything on the list and thinking about how nice this questionnaire would have been during Raya’s first month or two of life and when Kaida was a baby. Dr. Rudolph stated that all of those behaviors could indicate that the feeding problem is a behavioral issue rather than an organic issue (something physical) but that behavioral issues often result from physical disorders. For example, I have a certain child who has struggled with chronic constipation since before her first birthday. The problem was most likely a result of an intolerance to the milk products (pediasure & milk) that she was taking in at that time. She learned early on that pooping was painful and so she started to avoid it. She would, and I quote, “squeeze my bum so the poop won’t come out” because it hurt to go poop. Over time, the physical issue of the allergy or intolerance was no longer the cause of the problem, and it became behavioral in nature in that she was consciously avoiding going poop because of the fear that it would be painful. The physical results of pain, lack of appetite, and chronic constipation were the same, but the cause had changed.
“Tube feeding can help kids with severe FTT and malnutrition make great strides developmentally but won’t help their appetite drive.” I agree. Tube feeding became absolutely necessary for Raya. She was already not taking in enough calories orally to sustain an adequate growth rate prior to being switched to formula, but after the switch, she refused almost all of our attempts to feed her orally. She was not to the point of severe FTT yet, but she was malnourished and malnutrition hinders development. Once she started tube feeds, she did start to grow and followed a good pattern of development with only mild to moderate delays in certain areas, but she went from low appetite drive to absolutely ZERO appetite drive, and now at 2 years old is finally starting to discover appetite again.
“Skills limit the ability to ingest normal amounts” If a baby is needing/wanting to be fed more often than every 2 hours, doesn’t eat enough at a time, or takes too much or too little time to eat, then they may be lacking the skills to eat properly. If it takes a baby less than 5 minutes or longer than 30 minutes to eat, he or she may be demonstrating lack of adequate suck/swallow skills. Also, if the baby “turns blue, becomes limp or worn out before the end of feedings, falls asleep before the end of feeding, make[s] loud breathing noises during/after feeding, etc.” those are all signs of poor suck/swallow skills. There are a number of anatomical disorders that can affect suck/swallow, such as cleft lip & palate, laryngeal cleft, trachea-esophageal fistula (TE fistula), esophageal stenosis/web/ring, & choanal atresia or stenosis.
Another cause could be the lack of coordination of the suck-swallow-breathing pattern. If the baby has difficulty with this pattern and it’s a choice between swallowing and breathing, their instincts will always tell them to breathe rather than swallow. Eating becomes very inefficient. Neurologic disorders can also make eating difficult. Examples would be things like myasthenia gravis, muscular dystrophy, cerebral palsy, Guillan-Barre, Arnold-Chiari Malformation, brain stem tumor, Drug-Tardive Dyskinesia, and Moebius Syndrome. Yeah, I don’t know what a lot of those are either, but they don’t sound good. In the category of “Other disorders associated with feeding difficulties” were Prader-Willi, hypothyroidism, Trisomy 18 & 21 (aka Down Syndrome), velocardiofacial syndrome, and Rett syndrome.
Your mind is ready to learn certain things at certain times.” The last cause he talked about was “inadequate experience during critical sensitive periods of development” as would be the case with a premature baby who was intubated at birth and therefore unable to eat at all during the time that a typical baby would be learning to eat. The way he explained it was that “The infant nervous system is programmed to acquire certain skills at specific times in development. Skill acquisition at these ‘critical sensitive periods’ is relatively effortless. Later skill acquisition is difficult.” An example would be the difference between learning a language when you’re young vs. learning a language when you’re an adult. A child’s brain is much more readily able to learn another language than an adult’s brain is. The same holds true for children learning to eat. If your mind doesn’t get the right input at the right time, it’s much harder to learn that skill and how to respond appropriately to that input.
After that, Dr. Rudolph went back to talking about the causes of inadequate or inefficient food intake, and more specifically “Learned aversion due to pain or discomfort following feeds.” We had realized early on that until Raya was no longer vomiting, the likelihood of her eating was extremely low. Who would want to willingly put food/formula into their mouth when the only way they ever tasted anything was while it was coming back up? Eating made her miserable, so she learned not to do it. Simple as that. There was a long list of disorders that lead to learned aversion because of pain, which included: candida or herpes infections in the esophagus, Crohn’s disease, Behcet’s, caustic burns, reflux esophagitis, Eosinophilic Esophagitis (EE or EoE), achalasia, ingestion of foreign body, esophageal stricture, peptic ulcer disease, dumping syndrome, gastroparesis, and severe constipation. Just reading through that list, it’s easy to see how a child with any of those problems could learn not to eat in response to the pain their condition causes them.
He talked about the “delayed progression of normal feeding skills” such as a child not transitioning to solid food, refusing foods based on textures (like a 2 year old who will only eat sour cream or things that feel and taste like sour cream J), and a child who should be able to pick up finger foods and feed him/herself but doesn’t or is unable to. Here are some “management strategies when intake is inadequate”:
·        Changes in feeding schedule & pacing
·        Utensil changes
·        Position & posture changes
·        Oral sensorimotor program w/food
·        Nonnutritive oral sensorimotor program
·        Behavioral therapies
·        Nutrition guidelines (amts & types of food)
·        Alterations of food (texture, taste, caloric density)
·        Changes in route of nutrition & hydration (NG tube, G tube, GJ tube, TPN)
And last but not least, another presentation of a pediatric feeding disorder could be a child who presents with recurrent respiratory disease such as pneumonia. According to Dr. Rudolph, recurrent pneumonia is “defined as 2 pneumonia episodes in 1 year or 3 episodes overall.” That surprised me. My oldest daughter had pneumonia twice within 6 months when she was between the age of 12-18 months and nobody ever mentioned the word “recurrent”. She’s almost 9 now and has had pneumonia at least 5 or 6 times, so does that mean she has “recurrent pneumonia”?? It was interesting to hear that. In the study he was referring to, they found that 48% of infants & children with recurrent pneumonia had some degree of aspiration with swallowing.

I realize this turned out to be incredibly long and detailed, but I felt like there was so much helpful information in this presentation that I could have greatly benefited from back when my first child was born, let alone when Miss Raya came along. J

1 comment:

  1. Awesome! Thanks! I so so so wish I could have gone!!

    ReplyDelete

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