Feed refusers – strategies and options

Managing a feed refuser can be a tough assignment and quite exhausting work. And everyone has their bit of advice to give. Its made that bit more tricky with kids who are also allergic or intolerant to a variety of foods so please take all of these hints and tips with a grain of salt and consult your doctors / dieticians and other medical professionals with regard to new foods that might be an issue for your child. Please also take into consideration the developmental milestones of your child.

Probably the most important thing to remember is that a child in pain, who is refusing because they associate food with pain (which can happen within only a few weeks of age) will continue to refuse to eat and most therapies you try will fail if the cause of the pain is not under control. Focus on getting the reflux under control. In extreme cases, this may mean tube feeding until surgery. If so, it is still important to continue to work with children to develop their feeding skills so that when the reflux is under control they will be able to pick up as best they can. Feeding skills are also important for speech development. Kids with severe reflux can develop some speech difficulties whether they’re food averse or not because of the way the muscles in the throat and mouth respond to constant vomit in the back of the throat.

Children naturally progress from breastfeeding or bottle feeding and a diet of milk only to purees, lumpy purees then solids. The rate of progression varies dramatically even amongst children with no feeding aversion or pain issues so be gentle with yourself and your child and try to keep a lid on your expectations if you can.

Many of these tips are aimed at children who are old enough to be trying different foods and textures.

Weight gain

Firstly, lets try and take the pressure down a bit. If your child has wet nappies and is not losing weight, they are not necessarily in immediate danger. Some kids put on weight very slowly and most paediatricians are more interested in the height and head circumference of your baby rather than strict adherence to the weight charts. Unless your child is in danger from minimal food intake, be more concerned about the pain your child may be in first. Doctors will likely be more concerned about a sudden drop or gain in weight (of more than two bands on the growth charts – ie 75th to 25th percentile) than a slow, steady gain or even plataeu. Its all about making sure they’re hydrated in the first instance. However, if your child appears listless or lacking energy as a result of poor food intake, go immediately to your nearest emergency department. We reflux mums tend to have a very high threshhold for what we will tolerate before heading to hospital. Be under no illusion, a listless child is a child needing urgent medical attention. If you are concerned and are in Australia, you can call healthdirect Australia on 1800 022 222 to speak to a registered nurse 24 hours a day. Do not hesitate to call.

How bad is it? What are your expectations?

Some kids become so feeding averse that they are literally frightened of food and the normal items that go along with food. Some children cannot be in the same room as food, some won’t sit at the same table, some won’t smell or touch it let alone put it anywhere near their mouths. Many are terrified of a spoon. Some will contentedly chew up their food, only to spit it all out and take another bite.

When it comes to babies, they do not instinctively eat beyond the first few days and weeks. After that, if a child is in pain and they associate that pain with food, they will quickly learn to refuse it. Babies may arch off the breast, refuse bottles irrespective of teats and every anti-colic system on the market.

Your first goal needs to be to do all you can to ensure your child is not in pain before eating. This means having a good plan in place with your medical professionals and continuing to advocate for your child when they are in pain.

And it becomes important to aim low. Your goal might be to have your child just be in the same room as a new food (or any food at all). It might be to just touch a new food or play with it. You could count smelling a new food as a victory. Or touching it.

Don’t fight them

It might sound like you’re letting the lunatics run the asylum but if your child doesn’t want eat – try not to force them. Offer, don’t force. If they don’t want to be in the high chair, let them roam about. If the child thinks he’s finished dinner, then he’s finished. Even if he’s had very little. If you just happen to leave food around for him to pick up later when its not officially “meal time”, so much the better. The aim has to be to make eating time a positive experience. If he doesn’t want to eat, try not to force him. Distraction can work (TV) or whatever, but don’t set up the forcing behaviour. Keep reading and use lots of different strategies, hints and tricks.

If food becomes a battle ground, you will lose. They will win.

Tips for very small babies

Try swaddling baby in a wrap for feeds and having arms tucked in nice and tight. It seems to have something to do with them feeling snug and secure which makes them more inclined to drink a bit more.

Slight jiggling on the knee while baby is attached to bottle (or breast). This seems to distract them enough to drink a bit more.

Placing gentle pressure on baby’s chin with your index and middle fingers while baby is attached to bottle or breast. If on a bottle, it involves letting the bottle rest in the palm of your hand and using the fingers of that same hand to gently put pressure on baby’s chin.

Using these three techniques together may help get more volume – one of our volunteer mums says for her it was a difference from 50-70ml per feed to 100-150ml per feed.

Try different places – a quiet darkened room, move between rooms (sometimes a change of scenery can help), take baby outside on the rug and watch leaves in the trees. Again its just about trying to distract them a bit while they feed.

Positioning – always try to keep them as upright as possible or if in a pram, propped as much as possible. Most will probably find it very difficult to feed a very small refluxing feed refuser in a pram – but worth noting that keeping them upright is important.

Temperature – sometimes babies will respond differently to different temperatures. They may find colder milk more soothing (if you are bottle feeding). Others respond better to room temperature or slightly warmed milk. Experiment with temperatures (within reason).

A word about dream feeding – paediatric gastroenterologists will rightly tell you that feeding a baby ready for bed, half-asleep or actually asleep may work but will also cause the child to reflux up to a few hours later because they’ve been laid down immediately after a feed. This is true. But sometimes there’s little choice in terms of increasing intake. It seems that babies and even toddlers who are in pain from reflux will more willingly eat when they are partially or fully asleep as their muscles are more relaxed and they are less aware of the pain it causes them. In these instances, if you are reliant on dream feeds to boost daily intake, the normal tips for managing a refluxer apply. That is, if possible, try to keep the baby upright for 20 minutes after the feed to help him / her digest and move feed through the stomach as far as possible before laying them back down. This of course depends on your ability to do it at all hours of the night. As with most things infant reflux, its a juggling act between trying to be gentle on yourself and doing the best for bubs. You’ll work out over time how much their refluxing a few hours later is related to how much you’ve held them upright after a feed. Just try to be kind to yourself.

All food is good food

Before our kids are born we all have very high expectations of the nutritious diet we will feed our kids. Parenting a feeding averse child can put paid to those expectations very quickly.

If it has calories and your child isn’t allergic or intolerant to it – offer it. At any time of the day.

Forget breakfast, lunch and dinner foods – there’s no such thing; they’re just foods. If your child will eat cereal and fruit for all meals and nothing else, but it keeps him and you going, that’s ok. Biscuits for dinner? No problem. Biscuits dipped in spag bol? Bring it on!

Make it fun! Play! Mess is your friend!

I know, I know – I’m talking to reflux mums, many of whom spend the entire day cleaning up mess and can think of nothing worse than cleaning up more. But if you can embrace messy food play, it helps.

Some food goes in, more than you might realise, but getting used to touching and smelling different foods just by playing with it is actually a natural developmental stage. Go with it.

Even just engaging in messy play (like painting or play dough) may encourage sensory development and improve their ability to touch new foods.

A word about medicine

Try not to administer medicine around food or with the same utensils as you use for food. Try to do medicines in a different room (like the bathroom) and using things like syringes rather than spoons. Kids catch on pretty quickly. Trying to hide medicine in food for feeding averse kids can be a dangerous game. They’ll work it out and they’ll then refuse another food and another utensil you’ve worked hard to maintain or re-introduce.

That said, we know quite a few who’ve managed to get away with the ol’ jammy spoon trick… you know tablet hidden in the pure fruit jam on the spoon. Just don’t be surprised if your feed refuser sniffs it out a mile away.

Sensory issues

These kids are extremely texture-sensitive. Think about what he/she does like to eat and try offering other foods / tastes within that same texture. Children who have reflux as they are growing seem to have often have sensory issues as well. They don’t like particular textures and may skip some all together. Some will like crunchy and refuse puree. Some will like puree and refuse solids. It may also manifest in other curious things like not wanting to walk on grass or sand; the feeling of certain types of fabric on their skin; brushing hair; brushing teeth. It doesn’t take much to overwhelm a kid who is already at sensory overload due to chronic pain (even if the chronic pain is now managed). Take those things into account and be gentle and patient with them where you can. Introduce new textures slowly and in fun ways. Use older or other kids to help.

Tips by type/ texture of food

Liquids – don’t be afraid to play with liquids. Blow bubbles in water, juice with a straw. Join in! Be silly. Introducing straws tips here.

Purees – these are great for messy play. Consider using a rubber training toothbrush for teething kids to chew on and play with. Use the rubber training toothbrush to play with the purees, if they’re already using it as a teether and see if they will dip or eat from it (this is handy for kids who are scared of spoons.) You can also try offering them from a cup. “Nose out” cups are worth trying with these kids. They can lift the cup to the mouth without the nose getting in the way. For kids who are particularly sensitive to lumps, use store bought purees. This is not a reflection on your cooking. There’s no way you can get purees as smooth as commercial processors so don’t bother – especially if you’re pretty sure you’re going to be dealing with food being rejected constantly. There are plenty available that can cater to most food sensitivities and plenty of organic ranges too. There is also no shame in offering the under 4 mth old purees to older kids who refuse mixed textures. If you’re having difficulty with purees, consider offering solid finger foods first then put down the puree later in the meal so the harder foods can be used as dippers.

Lumpy solids – some kids will skip this texture all together. That’s ok. No need to pursue it if its not worth the bother. It can be useful to create the mixed texture from something solid that may already be in the diet eg rice with a puree they also like. Let them play and mix them together themselves.

Bite & dissolve – these are often a first solid food. They are the kind that when places in the mouth, basically dissolve in contact with saliva. eg Baby Mum Mums, cruskits, even Cheese and Bacon Balls. (Again, take care with food with lots of additives and preservatives – they can be counter-productive to your goal as some kids will react very strongly to them – unfortunately they can also be good “breakthrough foods”. Perhaps use them as an introduction only – where its safe to do so – and once the texture is established, remove them from the diet. See also library titles on food allergies and intolerance.)

– Baby Mum Mums

– Little Quackers

– Rafferty’s Garden Yoghurt Buttons and Dried Fruit

– Sponge Fingers

– Ritz / Clix (not Jatz)

– Potato sticks (in the health food aisle – Healtheries Kids Care)

– prawn crackers (from Chinese Restaurants – be careful with allergies)

– Zig Zag Twisties

– Cheese & bacon balls (be careful)

– Cruskits (good for introducing soft cheeses like Laughing cow)

They are a good introduction to solids because they almost “swallow themselves”. Once they’ve been in the mouth for a short period of time, they become liquid and will be far easier to swallow. Some of these foods can be an introduction to purees for some kids. eg Dehydrated yoghurt that can be “chewed” can be a good introduction to yoghurt; similarly dried fruits can be a good introduction to fruits that may be used as finger foods down the track.

Finger foods – come in all shapes and sizes. Rusks, fruit & vege, toast, meat (cutlets can be great for something to chew on with just a bit of meat left over to bite off in they can manage it), hot chips etc. For proteins try lamb cutlet bones, fish fingers, chicken strips, chicken chippees or mini chicken drumsticks. If you’re dealing with a significantly food intolerant child, be careful with what you introduce and try only one new thing at a time so you know what your child is reacting to. These provide great possibilities for play. Remember that “junk” food can be a good introduction to other foods in that category.

Crunchy, crunchy, crunchy. For instance, won’t eat cooked noodles but may loves those mamee noodles in the packet? May hate ham but may love deep fried bacon bits. (Eeewww). Won’t eat cooked carrot and can’t manage raw carrot yet? Try carrot that’s been shaved, deep fried and with salt added. (Carrot chippies!) You can then work toward grading the tastes back from total crunch, to crispy, to slightly crispy back to normal.

Chewing and biting is important

Let them practise chewing without food being part of the equation. Consider introducing a rubber training toothbrush or any other toy / teether that the child likes to chew on. Chewing is important for oral motor development (they won’t be able to eat solids properly later without practicing chewing and it also plays a very important role in speech development. After a while, when the child is happy with whatever you’re using, start putting it on the high chair and using it to dip purees in. You might be surprised.

Junk food can help

Junk food can play an important role in getting things back on track. There’s no such thing as bad food – its just food. And some of the “junk” foods actually play a huge role as stepping stones in teaching children with feeding difficulties to learn to eat a wide variety of foods because these “junk” goods are usually easy to manage from an oral-motor standpoint, and/ or they have large sensory appeal. Junk food is often very easy to eat, it dissolves in the mouth easily and gives a big taste reward for a kid who might be living with a pretty icky taste in her / his mouth. So long as they’re not allergic / intolerant, they can be a great first step. With the bonus of having a few more calories. (Note: if your child has a history of allergy or intolerance – take care with foods with lots of preservatives, additives and colourings. It can be counter-productive. Use under advice and even where the foods seem to be tolerated, perhaps just use them as a stepping stone then remove from the diet. See also our library titles on food allergies and intolerance)

Social eating / distraction

You might notice that some of these children eat more when they are out in public. If there are other people to distract them from the discomfort. When they can see other people eating naturally (not over-acting for the purpose of coaxing the child). Some kids eat more (or try more new things) sitting in a shopping trolley. Some eat best when distracted by favourite tv shows. All of this is ok. Use all the tools at your disposal no matter how counter-intuitive they seem and no matter how different your parenting of this child is from your expectations of how your parenting would be!

“Odd” behaviours

Most of these “odd” behaviours make some sense when you consider these kids are in pain / discomfort from constant vomit in the back of their throat.

Fear of the spoon! Children don’t just associate food with pain, they can also associate some utensils with pain. Its not unusual to encounter a kid who’s afraid of a spoon. Offer your finger. Or theirs. Or a favourite teething toy. It doesn’t matter. After a while start leaving the spoon around. Maybe on the tray of the high chair if they’ll let you. Or maybe just use the spoon yourself. Leave a couple around. Make it clear that you are not forcing them to use the spoon. They can pick it up if they want. It may take a while to get to that stage.

Some children will chew up and spit out their food. This is a developmental stage for these kid. They’re getting used to chewing newer harder textures but can’t quite deal with swallowing them. They will get there. There is quite a bit of victory in the chewing-spitting stage.

1. They have food in their mouth.

2. They are enjoying chewing and the flavour.

3. They are developing chewing skills.

They’re just not getting the nutrients at the end. They will. Eventually. Hang in there and be encouraging.

“Cleaning” up

This will sound a bit crazy but try and avoid wiping their hands with wipes after a meal. They tend to hate it and it’s like a punishment for eating. Try getting a bowl of water and put it in front of them on the floor or table and let them have a splash around. Hands get cleanish and if you wipe her face at that point she doesn’t associate it so much with the meal.

The other option (which is easier and quicker) is just to hold her with her hands under the tap. Again, it’s fun and not a negative association with eating.

The big thing seems to be about control. The kids have no control over their own eating because we’re so often trying to force them to eat. You often seem to get further by letting them get messy and go for it themselves.

Weird tricks that have worked for some people

OTHER HELP

The RISA Library

The RISA Library holds lots of titles that may be of use to you in your reflux journey, including titles about breastfeeding, feeding and diet, food allergy and intolerance, general reflux titles – in fact the entire catalogue is worth a browse.

Vitamins

If your child is not getting nutrients they need, talk to your doctor about introducing a multivitamin that may supplement their limited diet. Also, if inflammation of the gasto-intestinal tract is under control, it is worth considering introducing a pro-biotic. Talk to your medical team about the timing of this.

Dietary supplements

Sometimes things like polyjoule are recommended to increase calorie intake. Be careful with these because they can also be counter-productive because they can also be constipating. As many of you would know, lots of reflux kids have motility issues and if their bowel is full, they don’t eat. So as much as it can be giving them some calories, it may also be impacting on how much he wants to eat.

Dieticians

Dieticians specialising in paediatrics can be invaluable when coming up with new ideas for foods to try and in giving you some parameters around what is a reasonable nutritional intake for your child, what is reasonable weight gain and help you manage what can be a very difficult time. Here’s where you can find an accredited practising dietician in Australia.

Speech pathologists

Similarly, speech pathologists and occupational therapists specialising in paediatric feeding can be brilliant in assisting with different techniques. Further, getting out to work with someone else with your child on feeding issues can help you in a huge number of ways. It can allow you to realise its a big, serious task you’re undertaking. It can provide essential support and encouragement. And it sets aside a specific time for you to discuss these issues with someone who knows how difficult it can be and devise new strategies. And just going to a different place to try eating new stuff can yield surprising results. Here’s where you can find an accredited practising speech pathologist or occupational therapist in Australia. Here is a list, provided by Speech Pathologists Australia, to help you find a speech pathologist near you who lists “dysphagia 0-5 yrs” as a speciality. NB: dysphagia means difficulty swallowing (so ask the practitioner if they have experience in feeding therapy too). Paediatric_Feeding_SPA_12032013

Medical assistance

There are some medications available that can increase a child’s appetite. They are prescription only and are not without side effects. They don’t work for all children but do work for some. Ask your paediatrician or paediatric gastroenterologist about these.

Also, in her book “What’s eating your Child?” Kelly Dorfman, a New York dietician specialising in paediatrics also outlines the importance of zinc as an appetite driver and the likelihood that zinc absorption may be impacted by the class of drugs often prescribed for refluxers, Proton Pump Inhibitors (PPIs). If zinc is low, appetite can be affected. Too much zinc though can also make a child feel ill so consultation with your medical team is essential.

Further, because many of our kids have gut motility issues, it may be counter-intuitive, but sometimes a gentle laxative can help. If they have a full bowel, there’s no where for the food to go and so they don’t feel like eating. Again, talk to your medical professionals about this.

Hospital Feeding Clinics

Most Australian paediatric hospitals conduct feeding clinics with children who are struggling to eat due to a variety of reasons. Usually it involves meeting with a dietician, speech pathologist and sometimes a paediatrician to review food intake, feeding skills etc. They will monitor weight and height (so you don’t have to) and tell you when to worry. Again, so you don’t have to. It also avoids quite a lot of the expense and is covered by Medicare.

International theories and expertise

SOS (Sequential Oral Sensory) – The SOS Approach focuses on increasing a child’s comfort level by exploring and learning about the different properties of food and allows a child to interact with food in a playful, non-stressful way, beginning with the ability to tolerate the food in the room and in front of him/her; then moving on to touching, kissing, and eventually tasting and eating foods. It is founded by Dr. Kay Toomey, a pediatric psychologist in Colorado, US who has worked for over 20 years with children who don’t eat. SOS have trained a number of Australian feeding therapists and are expected back in Australia for more training courses in July 2013. Details here.

Some extra reading on SOS: Top Ten Myths of Mealtime, Picky Eaters Vs Problem Feeders, Red flags for referral

New Visions – is based in Virginia in the US and provides continuing education and therapy services to professionals and parents working with infants and children with feeding, swallowing, oral-motor, and pre-speech problems and was established in 1985 by Suzanne Evans Morris, Ph.D. Gastrointestinal health and the child with feeding problems and Therapy Alternatives.

Ellyn Satter Institute is named for Ellyn Satter, Registered Dietitian Nutritionist and Family Therapist and internationally recognized authority on eating and feeding, who pioneered the Satter Feeding Dynamics Model and the Satter Eating Competence Model. They are based out of Wisconsin, USA and the website has a wealth of resources you may find useful. Articles and research are here and information on feeding different ages and stages here.

NoTube (Gratz method) – NoTube is a spin-off company of the University Hospital of Graz, Austria. NoTube offers services to parents and professionals affected by children with early eating behavior disorders, particularly tube dependency. This condition leaves a child relying on a temporary feeding tube without any medical intention or cause. The effects can be devastating, leaving the family awake at night and the child developmentally delayed. They provide an online training service focusing mainly on tube weaning. It can be a fairly drastic approach but many of the concepts are very helpful. In particular, play picnics a concept to help children learn to eat. We would advise being in contact with your local paediatric hospitals regarding tube weaning before embarking on this expense. In some cases though, it has been worthwhile for families and could warrant investigation depending on your circumstances.

Finally…

Its easier said than done but try not to worry too much about the weight. Doctors are way more concerned about height than weight. If they’re on the chart (and even if they’re not) and has wet nappies and is relatively happy, they’re not in immediate danger. It might be driving you nuts but the child is not actually in danger. Try not to compare them to the weight gain of other kids. Again, easier said than done, but its not actually a reflection on the health of your child. Don’t be in a hurry to wish tube feeding on your child. Its a long, hard road. Sometimes its necessary but exhaust all your other options first.

For further information on help with feeding see these presentations from our 2013 conference: