Finding Hope for Extreme Picky (Selective) Eating

Most (if not all) kids are picky to some degree, so much so, it is probably less typical to love all the foods, and more likely kids will be at least a little disappointed by whatever happens to be for dinner. Throw in a pinch of sensory and a dash of anxiety, and we have a recipe for so much more than the average picky eater.

Picky eating is “extreme” when it:

  • interferes with a child’s physical, social, or emotional development;
  • causes significant family conflict and parental worry;
  • limits a child’s ability to eat away from home, attend camp, parties, and participate in social events involving food.

Around here, we also call this Selective Eating Disorder (SED). The terms EPE (Extreme Picky Eating), SED, ARFID, (and others) continue to be used interchangeably to describe this anxiety / fear-based food refusal.

The good news is there is hope! On Tuesday, I spoke with Speech Language Pathologist, Jenny McGlothlin, and The Feeding Doctor, Katja Rowell, authors of the recently released book, Helping Your Child With Extreme Picky Eating.

book-rowell-mcglothin-epe

Picky eating is very common, especially in younger children. When a family is coping with extreme food refusal, it can be very isolating. How common would you estimate EPE (SED) is?

Jenny: We estimate that the prevalence is around 10-15 percent. If you take into account the census data of the US, that is about 4-6 million American children under the age of 10 with EPE.  If you look at children with developmental delays/disorders, it’s up to 80%

ARFID (Avoidant Restrictive Food Intake Disorder) is in the new DSM 5 (includes all the diagnoses that can be given by medical professionals), so [while it is now a recognized diagnosis], it is still not widely understood by those same medical professionals!

 

You mentioned 4-6 million American children may be anxious around food. But this kind of extreme picky eating really takes a toll on the whole family, doesn’t it?

Jenny:  Absolutely. The parents we work with are stressed in a way that is hard for those who don’t deal with it to understand. The whole family dynamic changes when anxiety is at the table.

 

Many parents worry about extreme picky eating rubbing off on more adventurous eating siblings. What do you think?

The Feeding Doctor: I think the negative atmosphere that develops around food and mealtimes can spoil eating for everyone at the table.

Jenny: I don’t think it is the actual EPE that rubs off, but the anxiety around eating definitely can. If the whole table is a place of anxiety, no one can eat in peace. Attitudes can definitely affect the other kids. If the child is made to feel that they are different or that their eating is unacceptable in some way, siblings see all the attention (even negative) around a child who doesn’t eat well, and children will compete for that attention sometimes.

The Feeding Doctor: If 95% of the time at meals is spent trying to coax or reward, or bribe a child into eating more or different foods, it disrupts the developmental process at the table for all the kids. Some kids may react to the anxiety and conflict by eating more, or less. Each child will react differently, but the tension and anxiety interferes with being able to tune into hunger, fullness and curiosity around foods.

Jenny: Also, there is the issue of what is served. Parents of children with EPE can get into the situation where they are serving the same accepted foods all the time for the child with EPE so they will eat, and the siblings’ more adventurous tendencies can get lost in the sameness of the food offered.

The Feeding Doctor: Yes, one of the things we hear all the time is how much siblings thrive under the STEPS+ approach we share in the book. Siblings who may not have the same challenges often blossom very quickly in terms of variety and self-regulation.

 

Your book discusses strategies to wean kids off distractions at mealtimes. When parents feel stuck using distraction to get their kids to eat, how can parents prepare for the transition into feeding without a screen at the table?

Jenny: Depends on a few factors: the age of the child, how long screens/devices have been used, and whether they have been used as a reinforcer for eating (take a bite and you get the toy or you get to keep watching as long as you keep eating) or as a way to keep the child occupied while you put food in their mouth.

For younger children, I’ve had many families just not introduce it at a meal and see how things go. When the child is at the table with a variety of safe, familiar foods served family-style with no pressure to eat anything, it is amazing how quickly they will show interest in eating by themselves.

For others, particularly older children, parents can have an honest discussion with their child about the WHY of the situation- that the reason they want to have meals without it is because they enjoy their child’s company and want to be able to have a conversation with them around the table. Coming up with a plan with the older child is a great way to help them feel in control of the situation. Having them choose what meal/snack to have it/not have it and then creating a very happy mealtime experience so they are motivated to return to the table without the device.

The Feeding Doctor: We talk about different approaches to wean, and ALWAYS help parents remember to respond to how THEIR child reacts. One child can go cold-turkey, another may need a more gradual approach.

Jenny: And while we are on the subject, it is important for parents to understand why not using distractions helps. When children are distracted by TV, toys, books, etc. at the table, they can’t pay attention to: 1) their hunger/satiety signals, 2) their sensorimotor system (putting them at risk for not chewing well, pocketing food, gagging because they aren’t manipulating the food enough because they are not tuned into the textures of the food) and 3) the food on the table. Neutral exposures to food have been shown to be the best way to increase acceptance and curiosity around new foods, so if you have a situation where the child never even looks at the food on the table, they miss out on all those opportunities. Tuning into hunger signals, paying attention to what is happening in their mouth, and looking at the food that everyone else is enjoying is the goal.

The Feeding Doctor: Supporting children to be tuned in eaters is critical. It may “work” to get a few bites in, but the distractions often undermine appetite. Hard for parents to give up those few bites though! We can’t tell you how often we hear parents of infants told to sit their child in front of hours of screens a day to get a few bites in, without a full eval or trying other more supportive things. Getting kids to “zone out” to eat can kill appetite, and for some children it can teach them to overeat over time.

 

Distraction is just one of several methods used to get children to eat. But children come in a variety of sizes, including small. Can children who eat very little, or only in front of a screen be trusted with eating?

Jenny: YES! It is a process, but when children are supported through structured meals (every 2 1/2-3 hours for kids up to kinder, every 4 hours for older children) and are allowed to take food from what is offered at the table, their ability to regulate their own intake CAN return. They can then eat the amount that is right for them. It is extremely difficult for parents to take the plunge, but for the parents I have guided through this journey, they say it is the most liberating thing they have experienced.

For the smaller child, I think it is super important to look at the child’s growth from the perspective of genetics (was one of the parents a small child/did they start off on the small side and then grow normally? I hear this all the time), and also to look at their growth in terms of height and not just weight. BMI is also a terrible measure of children’s growth; Katja can chime in more about why. Also, has the child shown slow but steady growth from day one? Or have they dropped off their own growth curve?

The Feeding Doctor: Yes, misinterpreting BMI is a huge issue. Small children are often labeled as “underweight” even if they are small and healthy. This kicks off the worry and doctors and others advising parents to get in those extra ounces or more bites which brings in pressure and undermines appetite! All the effort can backfire. We review growth charts in the book as well. Many docs don’t know this stuff, which is heartbreaking! Especially if your child has been labelled “Failure to thrive” get educated and find a clinician who knows about steady but low growth as probably healthy.

Jenny: Something that parents need to consider as well is the child’s OWN growth curve. Are they following their own curve and is it steadily going up? Or are they falling off their own curve? Comparing these small(er) children to the normal growth charts can be counterproductive at times, and can lead to lots of pressuring practices that don’t work anyway.

The Feeding Doctor: Many children have never been trusted with appetite, and often there was a problem that made it hard for children to tune in to appetite. Pain, reflux, prematurity and developmental delays, allergies… We review the feeding challenges that often start families down this road. So sometimes a child can’t tune in well, but often what we see a child where the pain, the reflux, the developmental delays are resolved but the anxiety, the pressure, the conflict, the power struggles are still there. A child’s appetite cues may be buried but not lost, and parents can take concrete steps to rebuild trust, to rebuild the child’s experiences by creating positive ones, to set up meals, schedules etc to support appetite. We’ve both worked with families where a child was described as “incapable” or “never” feeling hunger. With changes at home, within a matter of days, these children were asking for more, and one mom described with joy her son saying “I’m hungry” for the first time in 4 years!

Parents are sometimes told the child can’t feel hunger, or it’s part of the “sensory” picture, but the child has never perhaps had the opportunity to develop and listen to those cues?

Jenny:  Absolutely. I have had multiple cases where this happened recently. The child had “never” been interested in food, and after 24 HOURS of not pressuring and taking away the video and letting the child choose what to eat and how much, the child was asking for food, eating age-appropriate foods, and parents were amazed.

The Feeding Doctor: We also review when this is appropriate and when a child needs more support. If nutrition and growth are truly faltering, then doing this with the help and supervision of a pedi RD and MD is important. We spend a lot of time addressing the parent’s anxiety. This is scary stuff! This is why we love Mealtime Hostage and the private parent support group. Hearing from parents who have been there is so important!

 

I’ve been that mom! “I’m hungry” are miraculous words!! 

Jenny: So amazing when it happens!

The Feeding Doctor: Yes! We do a jig too with the parents. I’m sure our joy is nothing compared to that of the parents and the child, but this makes our day when we hear the successes!

 

Some moms have mentioned how they can’t feed with trust, or feed their child with the family because the child is “too old” to be at the developmental level with food they can handle (ie, a 4-5yo who can only handle smooth textured purees.) Is STEPS+ an appropriate feeding model for these families?

Jenny: Definitely. I work with these kinds of kids all the time in my practice, and they are obviously missing some of the key oral motor skills that they need to make the transition to more age-appropriate foods. We discuss how to facilitate improved skills in our book. Starting with self-feeding, using techniques like crumbing and including interesting family foods in the pureed forms is a great way to begin. I wrote this post explaining how this process works

It is interesting when you consider these children’s needs and how they fit into the needs of the family. They may have struggled with eating for so long that they don’t have any confidence in their abilities to eat, and no one else does either. Bringing autonomy to the equation can facilitate the child’s development of skills. When they are allowed to transition at their own pace with support from a good feeding therapist and their parents, it makes all the difference.

The Feeding Doctor: Can you ask the moms to explain their concern? Are they worried about the reactions of others to the child eating purees at the family meal? What are they having trouble “trusting”? We find that getting to the root of the worries is critical to moving forward.

 

One concern is the presentation of the meal. It’s hard to offer a purée for the whole family to enjoy. The main hiccup is presenting family food that includes everyone, but is obviously for only one person.

Jenny: I have suggested that parents serve pureed foods that are meant to be that way: yogurt, applesauce, hummus, guacamole, dips, soups, etc. so that the child sees other people eating them. Also serving the pureed version NEXT TO the regular version helps the child connect that they are eating what the family is eating. Interestingly, I have had many kids who, when their purees are presented in this way, they show more interest in the regular version instead smile emoticon

The Feeding Doctor: The psychological significance of putting things in the middle of the table, all together, is important. Maybe take one of “his” crackers from the bowl. If he gets used to reaching into the communal “family foods” it takes a barrier away to reach for other foods (then you don’t comment when he does put something new on his plate.) The goal, though it feels artificial now, is to eliminate “his” and “your” foods. It’s just dinner.

 

Extreme picky eating is both frightening and frustrating for parents, and many feel compelled to seek help. As feeding professionals, what is realistic to expect from therapy?

Jenny: There are a wide range of approaches to feeding problems in the therapy world. Finding the right therapy partner is crucial, and we provide a helpful list of questions for parents to ask a potential therapist. We feel that therapy that makes your child more anxious about eating or around food is probably doing more harm than good. We support a relational focus during feeding therapy, which I explain here.

And while that is ideal, it is up to the parents to advocate for their child so that therapy facilitates rather than further exacerbates the issues (especially anxiety). Experience of the therapist matters, but if the therapist is responsive to the child and partners WITH the parent, it can go very well. As far as expectations, it behooves parents to be aware that there are some very intense therapy approaches out there that are recommended by medical professionals who don’t know of the alternatives. Therapy shouldn’t make the business of learning to eat “work”; it should facilitate the child’s own development and guide the parents in the ways they can support that development at home.

The Feeding Doctor: We boil it down to, “If what you are asked to do increases anxiety, conflict, gagging or vomiting, it’s almost certainly not helping.”

 

With EPE, a child’s weight can be anywhere on the growth chart. What would you suggest for the parent whose child is in the upper percentiles, and therefore doctors won’t take the child’s eating struggles seriously?

The Feeding Doctor: The reliance on growth as the ONLY indication of a problem is bogus. Thankfully, the new diagnostic ARFID diagnosis mentions psychosocial and other factors. So many docs are truly clueless, if well-intentioned. Share a blog post from our website or others, share the book perhaps. In reality, there isn’t much MDs can often do other than refer to help or get support like websites and books to parents. The real progress will happen through the feeding relationship between the parent and child, sometimes with the support of therapists. Most importantly, we want doctors to not make things worse, and to know at least the basics so they can handle routine questions and feeding blips, as we call them, and rule out medical issues when things aren’t going well.

We wrote the book for parents in these situations. It should help turn things around at home and find the right help if it’s needed. Not all kids with feeding challenges need therapy, and many who need it don’t get it.

 

What signs tip the scales from a patient, supportive feeding environment at home to needing professional feeding therapy?

Jenny: I think if you have any concerns about a child’s sensorimotor skills (ability to perceive foods in a “normal” way in the mouth and able to manipulate them fully in an age-appropriate way), I would go for an evaluation. Having a skilled SLP (or OT who is trained in feeding) take a look can help you rule out/rule in the issues that may be at play. That being said, I have worked with families where the child’s skills are there but the family needs a lot of support getting on track with all the other pieces. Every family is different, but some parents really benefit from having someone to guide them and bounce things off of.

Therapy should never undermine the strides parents are making at home to decrease anxiety and increase positive mealtimes and relationships with food.

 

book-rowell-mcglothin-epe

Extreme Picky Eating Help is on Facebook, and on Twitter @EPEhelp. Sign up for the monthly newsletter here.

Mealtime Hostage is grateful to Dr. Katja Rowell, and Jenny McGlothlin, SLP for providing a comprehensive resource to support families toward peaceful and enjoyable mealtimes.

Get your copy of Helping Your Child With Extreme Picky Eating by Dr. Katja Rowell and Jenny McGlothlin, SLP in the Mealtime Hostage Pantry.

Listen in: Jenny will be talking about Helping Your Child with EPE on KERA’s “Think” radio program this Thursday, June 18 from 1-2 pm CST.

 

Advertisements

One response to “Finding Hope for Extreme Picky (Selective) Eating

  1. My son is 28. What info do you have for adults. This disorder was not understood when I was trying to find help for my son in the last, almost three, decades. He is still dealing with this. It is still anguishing for him, and me. M. List

    Date: Wed, 17 Jun 2015 17:53:37 +0000 To: classylist@hotmail.com

Comments are closed.