Transcript: Nutrition and Cerebral Palsy

Nicola Welford (00:00:01):

Okay, good evening everybody. Thanks very much for joining us to learn about nutrition and cerebral palsy. We would also like to thank our guest presenters here tonight. We have Dr. Anna Delahunt, who is clinical specialist dietician in pediatric neurodisability. And we also have Avril Rushton who is a senior speech language therapist. So we've got great expertise in the room here this evening. So I'm just going to just, I suppose, mention a few housekeeping rules. We have you all on mute and we have your cameras turned off. You are welcome to turn your camera on if you wish to do so. We will unmute you at the end of the presentations where we will allow for the Q&A to take place. You can still feel free to enter your questions into the chat option there and we'll keep an eye on them as they come in, but we will address them all at the end of the presentations.

(00:00:52):

We can't answer any specific questions that are very personal or related to an individual specifically, but we will try and answer generic questions as best we can. And we can also take your details if we need to come back to you at a later stage. The webinar will run until 8:0 PM tonight. It will be recorded and the recording will be made available online in a couple weeks time. So we hope that you enjoyed this evening and we hope that you all take something away with you from it. So thank you very much.

Dr. Anna Delahunt (00:01:23):

Good evening everybody. It's lovely to be here and thank you very much for asking me to present today. So my topic today is optimizing nutrition with cerebral palsy. As Nicolas said, I work in CHI at TALA in the area of neuro disability. So I apologize in advance that a lot of my presentation is probably geared towards children. So I hope if there's adults on the call that I'm not ignoring you, but it's just to try and go with what I'm used of. But we'll have time for questions afterwards. So the areas that I was going to cover today was optimizing nutrition with cerebral palsy, and that is the areas of growth and body composition, assessment, monitoring of nutrition, looking at the diet as a whole of all the nutrients, micronutrients. And then Avril's going to cover dysphagia or and/or motor difficulties. And then we'll look at some gastrointestinal issues and optimizing nutrition when there's poor nutritional status, but we'll include some discussion on excessive weight gain as well, which can be an issue.

(00:02:41):

So as both the background, we know that there is a high prevalence of feeding and nutritional problems with CP, but it varies greatly depending on motor function and subtype. Sorry, I just want to minimize that. Yeah, that's fine. So cerebral palsy affects the musculoskeletal system, which in turn will affect muscles in the body that control chewing, swallowing, and posture. And these weaknesses then can impact the ability to eat independently. And feeding difficulties in the area of cerebral palsy will normally be a combination of oral motor and gut-related problems such as postural complications, swallowing difficulties, gastroesophageal reflux, gut dystonia and constipation. And it's estimated that one in four children will have a feeding difficulty, but they're very broad statistics and it will depend on where you are, what sort of intervention you're able to have. But that's the current statistics. So because children with CP commonly experience eating, drinking and swallowing difficulties, Taylor and their colleagues tried to reach some consensus between parents of children with CP and healthcare professionals on what were the most important interventions and areas for future research.

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So they came up with 19 different areas of management and support, and a lot of those we will cover today. But broadly speaking, the main areas that were of big importance would be targeting physical aspects of a child's swallowing issue, feeding strategies, and focus on family and wellbeing. Because as we all know, when feeding is not going well at any age, it can be a stressful situation for all. So nutrition is essential for optimal growth, which is a fundamental marker of health and wellbeing. And good nutrition is essential to prevent both under and overnutrition, both of which can have a negative impact on health and wellbeing. And just a potted input regarding growth, because there's a huge amount of studies around growth and a lot of them are conflicting, but overall children with CP do grow differently and it often is more evident in those with higher functional needs.

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A large US study, but it's now getting quite old, did find that children with CBP can be not as tall, but again, that could be changing as intervention is getting better and people are recognizing nutrition earlier and getting involved earlier. So hopefully in the next decade we'll see that change. There's also studies to show that those with the higher functional issues will have lower muscle mass and a lot of conflicting information around body fat percentage with some studies showing lower, some showing similar and some showing higher percentage body fat than a child of the same age who doesn't have CP. But one thing that is often seen is that the distribution of fat can be different. So whereas say when fat is put on on maybe someone's gaining weight, it might not go on the limbs, but might go around the center rather than on the arms and legs.

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So there's just different body composition. So when studies have been done, they found that there can be reduced growth, but it is more associated with those that have functional difficulties with motor difficulties and those who have feeding difficulties or those who are born small for gestational age. And then in a more recent Irish study of over 20 years where they looked back on 20 years of data, they found in ambulatory children with cerebral palsy that there was a higher prevalence of overweight in them compared to their typically developing Irish peers. So I think it just shows there's such a broad spectrum of area around growth in this area. So I think it's very individual how children grow. So a thing that wanted to emphasize was that we're not just always looking at weight as well. It's very important to look at linear growth, which is not just weight, it's length as well.

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So when we're measuring children, it is important to make sure that we're doing lengths. And even if somebody can't stand for a length, they can always lie for a length or have a knee height taken, which can be extrapolated and predicted height can be taken. There's other methods like ulnar length, which can look if there's no upper limb difficulty, ulnar neck can be extrapolated into height. Or then other measures would be mid-upper arm circumference where you look at body composition rather than weight or height. And then for plotting growth, I think people often ask me about disease specific growth charts for CP. They are available, but over the last say few years, there's been a few position papers that have come out to say that we're actually better off recommended using reference data from the general population such as the WHO rather than the growth specific CP charts.

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And that's really because we want to observe ideal growth based on standard reference population where there has been no illness that has affected growth both patterns. But very often I think what people say to me is they get plotted on a chart, but they're way off the chart. And in a way that doesn't matter is long, what we're really looking for is how people track on a chart rather than them being on a particular line. And the main thing is that somebody is tracking, they're not falling off their centile or there is not a huge discrepancy between weight and length. So really the most important thing is to have consistent serial measurements and to track and monitor rather than really know say you're on a certain line on the centile chart. So just to come into nutrition now, I think what I wanted to just really emphasize was that nutrition is the sum of all parts.

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There is no one food or one food group that is better than another food group or another food quality of food. Really, we need a balance of everything. And I know that the food pyramid is used a lot and I wasn't even going to show it today because people are so familiar with it, but I suppose the main reason I've put it up here is to say that we do need something from each of the food pyramid groups within our diet on a regular basis. So we need protein, carbohydrate, fat, fluid, vitamins, and minerals, and all contribute to growth and function.

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So energy requirements for assessing energy requirements for children and adults with CP is difficult because there's so many other factors that come into play. Currently, there's no specific guidelines on, there's no equation that's specifically for CP. So what's used usually is a regular energy requirement prediction using whatever prediction formula that you're using or using weight, but then taking into account growth, mobility, metabolism, muscle spasticity, dystonia, infection and surgery, and all of those can have an impact on energy. A rule of thumb is usually that if somebody is maybe a wheelchair user and not mobilizing, often their requirement will be lower than somebody who's mobilizing. So often it's around 60 to 70% of a regular energy requirement, but that's not always the case because if somebody is say a wheelchair user but has say dystonia or dyskinetic movements, that will really add to your energy requirement.

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To date, the research has shown that with dystonia or dyskinesia, there is a definite increase in energy expenditure. Whereas when there's just increased muscle tone, there doesn't seem to be the same impact on the energy requirement. But at the end of the day, every person's energy requirement differs. And we've often found that somebody who we think we've worked out the correct energy requirement for maybe starts to gain too much weight and we need to reduce it down. And that really is monitoring growth is the best indicator for energy requirements and tracking how somebody's growing or in an adult maintaining weight and maintaining good nutrition. There will, in some cases, say somebody's got a wound that needs healing or has post or pre or post-surgery where energy requirements will be increased to negate the negative effect of the surgery, especially if there's a time of difficulty eating post-surgeries.

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Often there's a lot of pain or discomfort post-surgery. So sometimes there will be an increase in energy requirement and protein to make sure that that person is going into the surgery as well nourished as possible. So protein is essential for adults and children, but particularly for children's growth, development and overall health and plays a critical role in building muscle, repairing tissue and supporting the immune system. So the immune system, the reason it produces antibodies that help fight infections, it's really the building block for muscle. It's responsible for repairing tissue and skin integrity. And as I was saying before, it's important pre and post-surgery. At the moment, there's again, no specific recommendations for protein intake, and we use the same guidelines as we would for children that don't have CP or adults who don't have CP.

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One thing that is really important though with protein is that if energy requirements are very low and sometimes due to metabolism or due to inactivity or low ambulatory status, we may find that we have to really reduce energy requirements. And the very important part of that then is making sure that at the same time you're not decreasing protein. So you might've come across trying to really maximize on protein when you've cut energy. Sorry, I meant to say where you get protein from. Well, I think most people would know that there's two types of proteins, the high biological and just the low biological. So high biological comes from meat, fish, eggs, milk, all of the dairy products, soya, beans, legumes.

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The reason why some of there is protein say in other foods, and it's not called high biological, is because it doesn't contain all amino acids, whereas the high biological that I've just named gives us all the amino acids that we need. So fluid, I think this is an area of huge importance, and I've put it in with nutrition because in a way it is so important when it comes to nutrition because often if someone is not well hydrated, they can have poor appetite or feel very lethargic or just not function well without a good fluid intake. And fluid is a hard one to maximize on, especially if there is any kind of swallowing impairment. So the risk of dehydration can be due to say inability to communicate thirst. Drooling can have an impact on your fluid intake perspiring or an unsafe swallow. At the moment, again, there's no specific guidelines, but we just use the typical guidelines which are usually calculated on weight.

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And just an interesting point with regard to drooling is that we all produce about 1.5 liters of saliva per day. So we can just imagine that it does have an impact if there is say an area time when you're losing. Now I know there's medication to help and in many people that really does help, but if it is an issue, just to account for it and to maybe increase your intake of fluid to make sure it's not being lost that way. Thickeners as well can make it difficult to drink enough fluid, especially if they alter the flavor of drinks. The typical thickener used up to three years of age is carabel, and that does have a very strong flavor, but does taste okay when a baby has had it from the time they're an infant and doesn't know the difference and has it within a formula.

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Whereas if you start adding it to other fluids, it doesn't have very good palatability and it also continues to thicken as you let it stand. But unfortunately, it's not suitable to use any of the clear gum-based thickeners before the age of three because of the content of magnesium in them. So something like Nusha's Clear can be used for over three years of age and that's much more stable. It doesn't continue to thicken and it's a lot more palatable. Sometimes some people might need to add a tiny flavor to the water just to cut out the taste of the thickener. But just to emphasize, I would find in my practice anyway that those that are on thickeners would struggle because there is a change in flavor and a change in texture when a fluid is thickened. So calcium and vitamin D, approximately 99% of our calcium is contained in the skeleton, and it is critical in building strong bones and teeth and regulating muscle contraction and making sure blood clots normally.

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And we usually talk about vitamin D at the exact same time because without vitamin D, you can't absorb calcium, so they both go hand in hand. So vitamin D is essential for the absorption of calcium and phosphorus. It's crucial in supporting the immune system and important role in muscle function. So why is it so important for bone health? Because without it, it's inability to build bone and therefore you're at much higher risk of osteopenia, osteoporosis at a later date. And it's during childhood that all the bone is laid down. Some of the risk factors would be decreased mobility. So when you put weight on your legs, on your body, that encourages osteoclasts to form bone. And without that weight-bearing, there is already a risk factor for having low bone mineral density. Medication, there are certain medications that do impact vitamin D. So some of the anti-epileptic medications would just change the metabolism of vitamin D, so therefore it's just really important for people to make sure to be including good quantities of calcium and vitamin D within their diet.

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Then again, there can be poor nutrition or limited intake, as I've always said about suboptimal vitamin D levels. So where do we get calcium? And I think everyone is familiar that calcium is from dairy foods. And the reason why that is so emphasized is that it's the absolute best bioavailability. So even if calcium is in other foods, there's lots of other foods that contain calcium, but you'll never find another food that has the same bioavailability as milk and dairy from cow's milk.

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But then there are people who don't eat or drink cow's milk and don't want dairy foods, and there are other sources, but they are possibly just less easily to absorb. So other things like fortified breakfast cereals, peas, beans, green vegetables, broccoli, spinach, cabbage, the soften bones of tinned fish or salmon, sardine or salmon. There's a good few white breads now that are fortified with calcium and some dried fruit contains calcium. The milk alternatives that are out there, so they're not allowed to become milk anymore. They're usually called either oat drink or coconut drink would usually be very well fortified or soya drink would be well fortified with calcium, usually to the same level as cow's milk and goat's milk also would be fortified to the same level. But if you go for an organic brand, it is usually not fortified.

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So for those from the age of one to nine, we need three portions of calcium rich foods per day. And then from nine to 18, that really increases to five portions per day, which is quite challenging to get in. But it's because that's the time when bone is being laid down and that's the window of opportunity to build strong bones. After that, it's usually three servings per day from 20 upwards. And it's not that you still need calcium, but that window of laying down bone is that teenage time between nine and 18. So I just though I'd look at some of the alternatives compared to milk and cheese and yogurt. So you can see over at the left, the full fat milk, the super milk. Soup milk is very, very high, are all very well for it. They're very high in calcium. Then if you come over to the other side, there's one specific one that does actually trump all of the dairy products, and that's redibrek, which is highly fortified with calcium.

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So it's a good option if somebody isn't drinking a lot of the dairy or doesn't like dairy, but you do need to mix it with something. And then there's other calcium resources like tahini, sesame seeds, chickpeas, baked beans. But as you can see, they're lower quantities. There's also a very good amount of calcium in figs. Some of the fortified breads and ground almonds would be another source of calcium. Vitamin D, we can only make vitamin D in Ireland between May and September because of the way the rays fall on us at 53 degrees north. And a large proportion of Irish people are insufficient or deficient in vitamin D. It's very difficult to get adequate vitamin D from our food. There is vitamin D in salmon, eggs, margarine, some oils, but the quantity of food you need to eat in order to get your vitamin D requirement is very high.

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So the HSC has recommended that all people, everybody should be taking a vitamin D supplement for those without any other illness or anything. If they're not in any other challenge, they recommend taking vitamin D from Halloween to St. Patrick's Day and then you can take a break. But for those who are maybe at risk, more higher risk, a vitamin D supplement all year is recommended. There is a caveat though, say babies that are drinking a lot of formula or even when somebody might've taken a long time to move from formula onto cow's milk and maybe they're on a high energy formula and they're over one years of age, they're very well fortified with vitamin D. So often there's no need for vitamin D supplement on top of that.

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But once somebody's off formula and on regular cow's milk, then there would be a difference. I think the guidelines say if you're drinking over 500 mils of formula, that vitamin D supplement is not required. But as you can see there from the age going up from one to four, then from five to 12, and then teenager and adults and older adults all require vitamin D supplementation. Also, just there may be times where if you have a vitamin D deficiency or say it's been picked up on a nutritional blood that you're low in vitamin D and you've been put on a higher supplement, you may be advised to stop your vitamin D for a certain amount of time because you don't want it to be too high either. So just want to make sure people are aware of that caveat. So other important nutrients, iron, I think everybody's aware that iron is extremely important.

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Micronutrients, it carries oxygen around the body and the lack of iron will lead to iron deficiency anemia, which causes tiredness, fatigue, lethargy, poor wound healing, and general not able to perform cognitively the way you would if your iron is at a good level. Again, the best sources are red meat and red meat of all, it's like the calcium, it's the bioavailability is huge. And even though you might get the same amount of iron in something like spinach, it will never have the same availability to the body as the iron that's in red meat. But there's also iron in beans, pulses, fortified breakfast cereals, eggs, oily fish. Skimmed milk is now fortified with iron and the fortified breads. So I think this is super bread that has been fortified.

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I know from my experience at work, many people from a texture point of view or from a swallowing point of view or from even a sensory hype, maybe an oral sensory point of view, maybe red meat or meat are not easy to take or else it may be not a meat eater. So I suppose there are lots of other ways of getting iron in without having to go for red meat. Sometimes if intake is really poor or really struggling to get food in and your hemoglobin is what, I mean that's the marker that will say whether you're anemic or not. But sometimes people aren't anemic. Their hemoglobin is fine, but they just have a low iron store just because they can't regularly take a lot of iron in. And especially say when maybe someone starts to menstruate or during menstruation, that puts an extra.

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There's a lot more iron needed at those stages of life. So it may be that a multivitamin mineral containing iron may be helpful if unable to meet requirements. And that's very different to therapeutic iron, which is when you are anemic. So therapeutic iron is hard on the system. It's sometimes difficult to digest and can sometimes contribute to problems with constipation. Whereas multivitamin mineral just containing iron is just a small amount of iron that'll just make sure on a daily basis that you're getting your iron intake. And there's lots of different options. The ones I have down here is sprinkles, which you just mix with a drink and that contains a very good amount of iron or there's mini iron drops or there's sprays now, and there's also some liquids and all of them are over the counter that you can just buy. Well accept, sorry, the Vitamix and sprinkles.

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They're online. You can't buy them over the counter, but they're easily available.

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Another mineral that's important is zinc, and that's because it's important for the immune system, bone health and protein synthesis and growth. And a lot of the foods that you get iron from, you also get zinc from, except for also seeds and nuts contain zinc. And vitamin C for immune system, healthy skin and healing. And all the fruits and vegetables are best sources of vitamin C. So dietary fiber, I just sort of would mention this because of its importance in supporting digestion, promoting regular bowel movements. What it does is it adds bulk to the stool so that the stool can be passed in more comfortably. One of the things though that I would always say is that fiber in and of itself does not help to make sure that there's a good bowel function. There needs to be fluid at the same time because when you take fiber into the gut, it acts as like a sponge and so you need water in the gut to help it to pass through.

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So there's two different types of fiber. There's soluble fiber and insoluble fiber and soluble fiber you find in fruit, vegetables, legumes, oats, and then the insoluble fiber, it comes from wholemeal bread, pasta, rice, skins on fruit and vegetables and nuts and seeds. One thing about nuts and seeds is it can be very helpful to increase fiber, but it should be done very slowly because all of a sudden giving a huge amount of fiber to the gut can make somebody very uncomfortable and it just needs to be introduced very slowly. And also fluid needs to be increased at the same time to ensure that you don't get problems with it be actually making the situation worse. So now we're just going to move on to Avril's going to talk to you about feeding, eating, drinking and swallowing difficulties. And the reason we've included it here is because often it will contribute to feeding to pure nutrition.

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So up to 46% will have poor nutrition as a consequence of feeding difficulties. So I'll hand over to you Avril.

Avril Rushton (00:32:02):

Thanks Ana. Thanks very much. If you just want to keep the slides going as I talk, I'll just maybe give you the nod to move it on. So hi everyone. Thanks for inviting me along this evening. As Ana said, my name's Avril. I've been working as a speech and language therapist in the area of pediatric complex needs for quite a long time now. And I've just been asked to cover a little bit about dysphagia and neuromotor difficulties this evening and how it relates to our children, our young people with cerebral palsy. It's a really big area to cover in such a short time. So I've just pulled out a few thoughts to share tonight. So we'll start off with some of the facts. A single swallow requires the use of 26 muscles and six cranial nerves. This is all from research that's been done. Eating is the only bodily task that requires the use of every organ and all of the senses.

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And the incidence of feeding disorders is estimated to be 22 to 45% in typically developing children. And that increases up to 80% in children with developmental delay.

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So that just gives us a little short snapshot of what we might be looking at. So this little slide just shows some concerns that we hear from parents about how their child's feeding can be impacted. So I'll just read a couple of them out there. Jake coughs when he's eating. I'm worried that he's going to choke. Or Nathan gags on lumps and sometimes throws up his food or Poric has trouble chewing hard foods, often spits out bits of his food. You can read through some of them there. Some of these might resonate in your situation. Other things that might resonate are just disengagement cues like facial grimacing, finger splaying when you're trying to feed your child. These can all be a sign that something is causing discomfort for your child during the feeding process. And why is this happening? So next slide just shows the iceberg.

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So the iceberg is an illustration that you're probably all familiar with. What we can see in front of us is just the tip of the iceberg. There's a lot more going on under the surface that we can't see with our eyes. So these situations that we just spoke about on the previous slide are just like the tip of that iceberg, the bit we see, and we need to dig a little bit deeper to understand what's happening underneath the surface. We touched earlier on how complicated feeding is. It involves every one of your body's organ systems. It requires all of those systems to work together. And in addition, every muscle in the body is involved. We learned one swallow can take up to 26 muscles and six cranial nerves coordinating. The cranial nerves are the nerves that pass through the brain to different areas of the body with instructions and information.

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And we know that cerebral palsy impacts on the brain. So there's a high likelihood that feeding will be affected. Plus eating is the only task that we do that requires simultaneous coordination of all of our sensory systems. Learning, development, nutrition and the environment here have to be integrated to make sure the child eats safely. So it is really, really complex. And sometimes we just think that eating is just putting food in the mouth and swallowing, but it's so much more complex than that. The next little slide shows that I popped in this illustration just because I find it helpful to visualize what happens from a physical perspective when we swallow. It's a little bit busy, but if you just have a little look at it there, it shows a cross section of the head and neck of an infant and beside it an adult. And if we just look quickly here at some of the differences that happen as the infant develops, on the left, we see the infant anatomy.

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That large shaded oval in the middle is the tongue. You can see the infant's tongue fills the whole of that oral cavity and that's necessary for the pressure vacuum to build up when a child starts to suck. When the nipple or the bottle teeth are held in the mouth, the tongue and the jaw create a vacuum and the milk is propelled back. It's really important that tongue fills that whole cavity. But in the adult, there's more space there in that oral cavity. You'll see a space between the tongue and that palate above the tongue. That's necessary there to allow space in the mouth for the tongue to be able to move around to chew food. The chin has developed, the mandible, that jawbone has grown outwards and downwards. And again, that leaves more space around the mouth for the adult to chew food. Go back to the infant picture again, you'll see that soft palate.

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Now I'll try and point it out to you here. It's that little piece that dangles down from the roof of the mouth at the back there behind the tongue. And the epilotis, that's the little flap of cartilage that comes up at the base of the tongue above the voice box or above the larynx. They're almost meeting there. If you follow the tongue back to the right hand side, you'll see that little piece coming down and that little piece coming up almost touching there. And that epilotus, the bit at the bottom, acts as a protective lid for the airway. So during a swallow, it closes down over the airway and then it lifts back up afterwards to allow for breathing. It stops the food going into the lungs as the swallow is happening. All of this is really, really important for that suck, swallow, breathe rhythm for a baby.

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But you'll notice there on the right hand side with maturation, that gap widens at the back of the mouth. And with this, we need to have more accurate oral skills in the mouth to keep that swallow safe so that food just doesn't fall back in the mouth and down into that airway unprotected. In the next slide there, Anna, you'll see just really quickly going through developmental stages. So early stages of sucking, then we move on to early spoonfeeding, then spoonfeeding and finger feeding, then chewing and cup drinking. And then later more adult feeding develops, firmer foods, dribbling reduces. The child learns to chew with their lips closed. They start to use a fork. They start to cut with a knife. It all starts to get a little bit more complex. That's just a really quick overview.

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Next slide. Thanks, Anna. So the International Dysphagia Diet Standardization Initiative or the ITSI framework was implemented in Ireland in 2019 and it was developed by a global team of experts, which included dieticians and SLTs among others. And it's an international recognized framework that provides a standardized definition for all liquids and food textures. And it was developed to ensure safety and clarity in mealtime planning for children with feeding difficulties. We find this really, really useful as speech and language therapists. It helps us to provide recommendations, tailored recommendations for safe eating and drinking. We assess the child or adult's ability to manage textures on this eight level continuum, and then we match that to the appropriate IDSI defined foods and drinks. Each level you'll see has a text label, a number and a color code for easy identification. And we can then adapt feeding goals to each of the skills.

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If you move to the next slide, Anna, then I'm going to really quickly run through each level and try and match the level with the motor skill needed to match the consistency and then give examples of foods at each of those levels. We're limited in time here, so I'm trying to go through this as quick as I can, but if you have questions about it at the end, feel free to ask. So if we think about level zero and one, we think about those free flowing liquids or those very slightly thickened liquids. Remember in the infant that tongue fills the whole oral cavity. Epiglottis and the soft palate are there to provide that protective barrier to keep the lungs safe. So as the child grows, these safety features change. The oral cavity expands, the gap at the back widens, and so greater oral motor skills are needed to manage this consistency.

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So if the swallow is disorganized at this stage, your clinical team might suggest mild thickening of liquids. This happens to slow down the movement of the liquid in the mouth, gives the infant or child more time to activate that brain signal for the epilotus to protect that airway and those lungs. The next slide at levels two and three, we're looking at drinks that are mildly to moderately thick. So natural examples of these might include things like smoothies or yogurt drinks. The thickening of the liquid, again, as I said earlier, slows down the speed that the liquid travels through the mouth and it allows more time for the child or the adult to initiate that engagement of the airway protection. But at this stage, increased tongue control is going to be needed to propel that liquid back because of that increased thickness.

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At level four, we've got the puree and the extremely thickened liquids. This consistency is often given on a spoon. It can't be sucked easily through a straw. So for this consistency, our children will require increased skills from moving the puree through the mouth. We now see a little bit more downward lip action. They can move the puree from the front of the mouth, press it against the roof of the mouth, carry it backwards where that swallow is triggered. We start to see kind of a little munching action here at this stage. We're not yet getting to the stage where they're going to be chewing yet, but unlike pure sucking, the oral structures now need to move independently of each other a little bit more. So the tongue is going to need to move a little bit from side to side and the jaw is going to need to move from side to side also.

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And at this stage, we're going to work with the OTs and the physios to look at the gross motor stability for chewing.That's really important to progress to chewing because that's really, really important at this stage. Our little ones, our children and young adults even at this stage need really good head control, ability to sit independently or be well supported. And I'll touch on that a little bit later. So moving on then to level five, we've got that minced and moist consistency. And at this stage, the oral motor skills again are increasing. That tongue and jaw coordination is needed for chewing, that again, bolus propulsion using the tongue, moving it back to the back of the mouth.

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The child needs to be able to tolerate mixed textures in the mouth a little bit more at this stage. Small lumps are part of this consistency. So they need to be able to manage to differentiate the textures, chew the very small lumps, break them up and then swallow them both safely. And I'll give some ideas a little bit later on in how we can try and help move from this minced and moist to the finger foods a little bit more easily and smoothly. So then level six are soft and bite sized pieces. Now we really need to have a little bit more engagement with the gross and fine motor skills. They're coming into play a little bit more now.

(00:42:43):

Advanced chewing skills are needed. We need to get that side to side tongue movement to move the food onto the molars for biting down. They need again, a little bit more jaw stability to be able to isolate that jaw and move it to chew. And again, they need to be able to tolerate mixed check textures without gagging. So you've got some examples there of what those textures might look like. And then level seven is our regular, our easy to chew foods. This is our regular table diet. Our child has now mastered mature chewing skills, that rotary jaw movement, that moving the jaw side to side, that tongue moving the food in the mouth, moving the food that needs to be broken down across onto the molars, back into the middle of the tongue to be able to form a bolus and then propel it back really safely.

(00:43:30):

And again, remember all of this involves triggering that epiglottis to move down to cover the airway, to protect it, to have a safe channel for the food to go down and move it back up again for safe breathing afterwards. So that's just a really quick whistle stop tour of each of those different consistencies and the reason why we need to develop safe patterns of chewing for safe swallowing. I spoke a little bit earlier about how often the transition from puree to lumpy foods can be hard for families and we sometimes get stuck trying to move from smooth to lumpy foods. This little diagram here from Kay Tumi who developed the SOS approach to feeding program can be really helpful. It's a really busy slide. There's loads on it, but you'll notice often we try to move from. If you go halfway down the page there, you'll see that we try to go from soft mashed table foods or smooth puries into mixed textures.

(00:44:25):

And this can be a really, really tricky transition to make. She suggests a few strategies here. You'll see them on the right hand side. She suggests that we start to introduce what she calls hard munchables at this stage, foods that we don't expect our child to eat yet. They're just for practice. So she suggests things like chunky raw carrot sticks, frozen melon sticks, something like frozen waffle strips, pancake strips frozen. They're foods just for exploration and the idea isn't that your child is going to eat them. It's just to help your child to explore food in their mouths. Traditionally, we might have used things like plastic chewy toys and things, but what we realize now is actually giving a child a food to use for exploration helps them to understand a lot more about the food. They're learning about taste, smell, texture, and the tongue starts to move towards that sensory input a little bit more intuitively.

(00:45:28):

Now I would suggest we be really, really careful introducing these hard munchables if your child has a strong bite reflex, because without knowing it, they can bite down with real force on this and they can bite into it and that can be unsafe. So if you know that your child has that strong bite reflex, if they're biting down on a spoon when you put it in their mouth and they take chunks out of it, don't use hard munchables at this stage. But another strategy to suggest here is using what she calls meltable hard solids. These are foods that appear solid, but once they come in contact with the gums or the teeth or saliva, they melt immediately. So these are things like baby puffs. Do you know those meltable baby puffs that you can grab in the supermarkets or skips crisps? Once you put them in your mouth, they melt.

(00:46:13):

They don't leave lumps behind for your child to have to manipulate. And then she moves to soft cubes. These are things like soft avocado, soft banana, soft override pears, things that when you put them into the mouth and onto the teeth, they literally just disintegrate and then move to what she calls soft mechanical single texture. So this is things like soft pasta, scrambled eggs, foods that break apart immediately in the mouth. And if we move on to the next slide, you'll see some examples. Now this again is a really busy slide. It's very American. Some of these examples are what you'd find in American food store because it comes from America, which just gives you a very, very quick overview of what some examples can be of those hard munchables, those meltable foods, those soft cubes and those soft mechanical. And you'll get them on KTME's website if you want to look at it afterwards.

(00:47:09):

So I'm going to move quickly on here because I'm conscious of the time and just really, really quickly say feeding difficulties always have a cause. There's always a background reason. It can be due to the medical diagnosis, it can be due to physical disability, it can be sensory and origin, or it can be all of the above, and it's not a result of behavior. Just to remind everybody of that, I know most of us already know it, but it's not. Sometimes you can hear people say it's behavior, it's not. Feeding difficulties always have a cause. I'll probably skip that next slide, Anna, because we're running short of time. I'm just going to look at some strategies here now. And one of our key strategies for safe feeding is positioning. This is an area that our SLTs and OTs work really, really closely on. We need the child to be correctly supported for feeding to support that safe breathing and swallowing.

(00:47:59):

We know that the signals needed from the brain to initiate a swallow include all of our muscles. And again, we talked about it, those cranial nerves. And we don't want the child to have to focus on supporting their trunk or their legs or any other parts of their bodies when we're trying to get them to focus on those muscles in their mouth and the swallow. So this is a time when we use outside supports to take care of all those other muscles and allow the specific swallowing muscles to do the really important work. So the safest position for your child, the ideal position for them is to be upright in what we call that 90 / 90 / 90 position. And you can see it in those pictures, whatever seating they're supported in, whether it's on your kitchen chair or whether it's on a slightly more supported system, the hips should be at a 90 degree angle, the knees should be at a 90 degree angle, and the ankles should be at a 90 degree angle.

(00:48:56):

And always have their feet resting on something. So if they're on the kitchen chair and their feet don't reach the floor, put something in there under their feet to support it, whether it's a box, whether it's something, a little stool, something to rest those feet onto so that their core stomach muscles don't have to work hard to keep their back upright. Chin should be in that slightly tucked position. If they're in a high chair or in a supported seating position, the tray on that high chair should fall between the child's belly button and their breastbone. And that allows for their arms to be resting in a really supported position on that tray or on the table.

(00:49:37):

And then that allows the specific swallowing muscles to do all the work that they need to do to keep that swallow safe. Next slide there, Anna. We can also support our child with our positioning. So if we're feeding our children, our positioning is really, really important too. We should be midline. First of all, we should be seated in front of the child so that they're looking forward at us face-to-face, in midline, right in front of them. Ensure their chin is in that nice little tucked position. If we're standing up above them, they're going to have to look up for that spoon or the food coming towards them. Keep yourself in that face-to-face position so that their chin is nicely tucked in. And we talked about that epilotus having to go down to protect the airway. If that chin is tucked, that epilotus goes down much more efficiently.

(00:50:29):

In this position, you're also a lot more aware of their attempts to communicate if they are communicating with you non-verbally. You can see their facial expressions really clearly. You can see their eye gaze. You can watch for those overt signs that food or liquid might be going the wrong way. Those look like eye tearing, coughing, finger splaying, those facial grimaces. You can see them so much more clearly if you're face-to-face with them. Those two little pictures there just show if your child is struggling with that jaw stability, and remember I talked about needing that jaw support for chewing, you can give a little bit of support. Be really careful if you're giving this hands-on support that you're not pushing their chin back or pushing their head back. It's a very, very gentle, just holding their chin really, really gently to allow their tongue and their jaw to work efficiently.

(00:51:20):

Next slide there. This is just a really quick slide I popped in. Often feeding becomes so medicalized and it's really easy to forget that food and meantimes are really important from a social point of view. And this slide just covers some of the ways that you can get back to the fun with food and mealtimes, even if feeding is tricky. So including your child in a shopping trip if that's possible, food prep at home, giving them food to play with. They can learn a great deal about food before it ever goes anywhere near their mouth and being messy with food. So popping that food down on their tray for them to explore while you're feeding them is a really, really important part of learning to eat, helping them to engage with the food even before the mealtime starts, letting them feel the food, smell the food, and just be engaging with the food rather than it be something that's given to them.

(00:52:14):

And that's me. I'm going to hand back to Anna now, I think, and you're going to cover the next little bit of the talk, Anna.

Nicola Welford (00:52:26):

You're on mute, Anna.

Dr. Anna Delahunt (00:52:27):

Yeah. Sorry. I know Nicola, the time is limited. I think there's about 10 minutes left of my presentation. Will I continue or do you want to.

Nicola Welford (00:52:42):

How are we? We've got no Q&A in yet, so maybe if everyone is still okay, I know we still have some people on the call, but yeah, maybe go with it then, Anna. I think it's important

Dr. Anna Delahunt (00:52:54):

What you want

Nicola Welford (00:52:54):

To cover.

Dr. Anna Delahunt (00:52:56):

I won't dwell on it. It's really just three more topics that I think do come up a lot in clinic. And one is the motility. And I think the more research that's done, and it's great because this area is really starting to be researched and showing the huge relationship there is between the gut and the brain, and that often it's what I think people will have heard of the gut-brain axis. So often things like reflux, poor gastric emptying or constipation can come from the difficulty that's already there and can be exacerbated maybe if there's pain or there's increased tone or the person is going through a very difficult time. So you can find that gut dysmotility gets worse as the person's physical difficulties increase. But we do find that the statistics are very wide from 15 to 70, 70%. 77% will have some issues with gut dysmotility.

(00:54:12):

And the foregut is the top of the gut, which would be mostly gastroesophageal reflux, and that's the one we probably come across most often.

(00:54:26):

So for gastroesophageal reflux from a nutritional point of view, I know medication is really used in a huge amount, but positioning is probably the biggest area that we would find works well because it's all down to gravity. If somebody is positioned in a good way, in an upright position, it'd be much easier for food to stay in the stomach. And then if there is a weak valve at the bottom of the esophagus, there's less likelihood for the reflux to come up. Texture modification, so as we were talking before, thickener can often be used because of just poor swallowing or unsafe swallow, but it also can be used to help in helping food to stay in the stomach so that it's not refluxed and therefore the vicious circle of it coming up and then causing issues with aspiration or problems like that. So another very practical way of doing it, it seems very simple, but it really does work is small meals often.

(00:55:35):

So just cutting down portion sizes so that you're maybe having three meals a day and three snacks and trying not to eat late at night and trying not to eat or eat your drink just before bedtime when you're going to be lying down can help to alleviate reflux. Sometimes food fortification, because if you increase the energy and protein density of food, you can decrease your portion size. Sometimes nutritional supplementation, if large meals are very difficult to tolerate, constipation management, pain management, and that's what I was trying to get at at the beginning is that if someone's in pain, it can often exacerbate issues with gastroesophageal reflux. And then medication is very important because it really can help to alleviate pain as well. And then looking after dental health as well. Constipation is something that comes up over and over again, and it really does impact nutrition.

(00:56:36):

There's no two ways about it that if somebody is constipated, there is such a knock-on effect on appetite, on how the person feels and can really interfere with quality of life. And because again, of this gut-brain axis and gut dysmotility, sometimes there can be delayed colonic transit time. There's also with decreased mobility, there isn't the same gravity which others that are walking will have.

(00:57:08):

In position can be difficult if it's not in a normal position. And then nutritional factors like not having enough fiber are more regularly we see not enough fluid. There's other medications as well that can exacerbate constipation and medications that are absolutely necessary, but just to be aware that some medications do make constipation more of a challenge, so you just have to find ways of managing it. So as I've explained that already, the impact is huge on somebody's wellbeing. So I think one of the recent papers I've read on this area is early recognition. So really what that is just trying to recognize it before it becomes a problem. And that's what we often would tell when we see our clients that come in.

(00:58:08):

Sometimes they would prefer not to take maybe a laxative, but sometimes it's better to prevent it than to have it and then try and sort it out. So sometimes maybe even a small amount on a regular basis may help to keep things going normally and then they can take a break once you get it sorted out, but letting it get to be a problem then can be much harder to reverse. So from a nutrition point of view, as I said, adequate fluid, a mix of fiber, not a high fiber diet, a suddenly high fiber diet can actually have the opposite effect, especially if fluid intake is in poor. So if you're introducing fiber, introduce it slowly. But once you introduce it slowly, all of the areas I talked about earlier, fruit and veg, whole meal products, seeds are all excellent for helping to increase fiber intake mobility, even stander is counted as mobility.

(00:59:18):

If that's all that somebody can do, even the gravity of standing for a certain amount of time in the day can help with the digestive system to work properly. Probiotics is an area could probably fill a whole hour on, but there's not a huge amount of evidence in children. They're looking at it really in relation to irritable bowel syndrome. But we have found in practice that a probiotic can help with issues with constipation. And sometimes, especially if someone's on a very bland diet where there isn't a lot of variety, it can help to put back some of the gut bacteria or post-antibiotics into the gut and make it a more better microbiome. Then I won't go into the laxatives, but there's a number of laxatives that can be very helpful, maybe not all the time, but at least they can help to alleviate the problem.

(01:00:14):

Undernutrition, again, there's a large statistics there out there, 29 to 48%, but that does depend on where you live or what kind of intervention or what sort of support there is. There are many, many things. Malnutrition is associated with many things like increased hospital stays. But I'll just skip onto the next guide because I think people are aware of what the impact of undernutrition is. But how do you recognize it? Well, if there's plateaus in weight or growth, if there's evidence of low body fat stores in conjunction with low weight, if you're finding prolonged or stressful feeding, dehydration or multiple chest infections, that might be a red flag, inadequate micronutrient intake and inadequate fluid intake. So undernutrition interventions, the main thing I would say is a multidisciplinary family-centered approach. So it's trying to work with it within the family and what normally is being done rather than before you go to any further steps.

(01:01:30):

Optimizing medical conditions, so trying to alleviate constipation, reflux, dental abnormalities, pain, depression, limiting medication, side effects, positioning, smaller, more frequent meals, adjusting the food or texture, and maximizing the energy density of food. Oral nutritional supplements are helpful. I'll just go into them briefly because there were a few questions around it and I wanted to just answer. And then behavioral mealtime strategies, looking at sensory, if somebody has a lot of sensory issues, trying to make sure they're eating in a comfortable area where maybe they're away from very strong smells or a lot of noise. And then involving the school or respite or carers. So just food fortication, this is a really important area that can make a huge difference. And a lot of the time it is the high fat, high sugar foods that might be looked at as those that will fortify foods. And the reason that high fat foods are used a lot of the time is that fat has doubled the amount of calories as protein.

(01:02:38):

So if you've one gram of fat, it's nine calories, whereas if you've one gram of protein, it's four grams or carbohydrates, same. So that's why including fat in your meals will automatically increase calories without increasing the volume. But there are healthier foods as well that will add extra calories that will also add extra protein and other good nutrients. So things like peanut butter or nut butters, skim milk powder. Cheese is an excellent fortifier. It also adds protein and calcium. Avocado would be a very high but very good fat. And then there's other things that I'll just go into. So nutritional supplements, there is a place for them. I mean, we would always go food first if possible. If there's a way of fortifying the food with food first, then we'll go with it. But sometimes nutritional supplements can help even short term because they've been devised to include protein, micronutrients and calories all in the same place.

(01:03:43):

And there's a number of different kinds out there. There's smoothies, there's puddings, there's the milk-based ones, there's the compact ones. So in 125 mils, you're going to get the same amount as you'd get in 200 mils of another. There's ProCal shot, which is within 30 mils that you can get a good amount of protein and calories. There's juices, which often are much preferred by people who are just not milk drinkers. And then there's powders that you can just add to food that'll, again, without increasing volume, increase your calorie and protein intake. Most of them are GMS approved. So if you have a medical card, they will be prescribable on the medical card.

(01:04:29):

This was just something feeding a nutrition screening tool. It's just a validated screening tool that's available online and it was devised by a dietician in Australia specifically for CP just to look at four questions. And it's four parents, out of those four questions you get a score and if the child scores over three, then it gives you a red flag that possibly you should be looking at some intervention or just talking to your GP or your consultant or your dietician with regard to whether you need to do some intervention to increase intake. And then there are some children and adults with CP who are very prone to excessive weight gain and that can be a lot of the time down to reduced physical activity or maybe just lower than typical energy requirements. And it's not understood as yet. Hopefully in the future it will be that some people just do have lower energy requirements and when you work out energy requirements, you do need to go down to a much lower level for somebody whereas somebody else may have very high energy requirements.

(01:05:48):

So reducing portions is probably one way of doing it, just looking at maybe small meals often rather than trying to really reduce portions and then finding somebody who's very, very hungry in between meals. So even introducing healthy snacks in between meals, increasing activity where possible, even if it's just a standing frame and not moving, it'll still contribute to activity. Reviewing and adjusting if somebody's on nutritional supplements or on any kind of feeding regime that can be reduced or adjusted. But then as I was saying earlier, making sure that if you do reduce calories, that you're making sure that you're still maximizing on micronutrients and protein. So just to takeaway points, I think early intervention is really important, identifying issues early and then intervening. They're working at the moment on neuroprotective strategies to promote oral feeding and protect against aversive feeding behaviors later. There's a lot of research going on.

(01:06:58):

We ran that in early years, careful tracking of multiple growth measurements and nutritional status and just making sure that the diet is balanced and there's an adequate intake of all the key mic nutrients. Thank you very much for your attention.

Nicola Welford (01:07:20):

Thanks very much, Anna and Evron. That was very insightful. And I forgot actually to introduce myself guys. Some of you probably know me and have met me along the way, but I'm a mom of an 11-year-old girl with quadriplegic cerebral palsy, non-verbal, and we've been on a massive feeding journey for the past 11 years and we're still on it. And nearly everything I think that's been covered here tonight, we've been there, done that. So again, thank you for your patience. I know we're a few minutes over on time, but we did start a few minutes late as well.