Questions you have about feeding tubes but were afraid to ask.

I’m squeaking in at the end of feeding tube awareness week with a post for anyone who has ever wondered why children would have feeding tubes.

My special area of interest is in working with children and families who are tube-dependent (in fact, I’m hoping I will get to do research in this area some day!), and so it is a pleasure to write this post, a quick run-down of FAQs and info about feeding tubes.

What’s a feeding tube?

A feeding tube is a way of children/adults getting nutrition into their bodies that is not via their mouths.  The one you are most likely to see (because it is most visible, and also a popular solution for more short-term needs) is an NG, or Naso-Gastric tube.  That means it goes into your nose and down into your stomach.

The other tube that is fairly common is a gastrostomy (not, as a lot of people think, a gastronomy tube, though that would be great, wouldn’t it?).  This is a tube that goes directly into the stomach.  Sometimes people call it a PEG (percutaneous endoscopic gastrostomy), though technically, that is just a term for one type of gastrostomy that is put in in a certain way.

Other less common tubes are oro-gastric (from your mouth into your stomach) and naso-jejunal/naso-duodenal tubes (from your nose, though your tummy and into different areas of your small intestine).

Why would a child need a feeding tube?

There are a few main reasons:

  • The child physically can’t eat- they do not have the necessary skills to eat, or they are too unwell to eat.  This may be temporary (e.g. if the baby is premature, or they are having an operation or treatment) or it may be permanent (e.g. if the child has an unsafe swallow, leading to food or drink entering the lungs).
  • The child is finding it difficult to eat for other reasons– this can be for lots of reasons, but some children who have had a lot of invasive medical treatment, sensory difficulties or pain associated with eating, may develop aversive behaviours in response to food that stop them eating, or stop them eating a good range of foods.  These children may need all or some nutrition through their tube to support them.
  • The child is not eating enough– this might be because they have a condition that means they require more calories than average, or perhaps their physical condition means that they eat very slowly and it is difficult to get through enough food to grow.

If a child has a feeding tube, does it mean they will never eat?

Not at all!  The long-term picture for feeding tubes depends a bit on why they have been put in in the first place, but many children are able to leave them behind and move onto oral feeding.  Some children will always need them for all or part of their eating and drinking.

Won’t a feeding tube make the child too lazy to eat?

This is not the case.  Feeding tubes help us to support children to grow and develop.  There are some children who can find it difficult to move on to oral eating, but these are children who have physcial, developmental or psychological reasons why this is the case.  These children are not lazy, and neither are their families.

When a feeding tube is introduced as a short or medium-term solution, there should always be a plan for how it is monitored and how and when decisions will be made to support the transition off the tube if it is appropriate.

Children often need therapy support to help them to build skills for future oral eating.  In an ideal world, children will have Speech and Language Therapy/Dietitian/OT/Physiotherapy/Paediatrician/Respiratory Team/Gastrointestinal team/ENT/Nursing in the right combinations for their individual needs to help them and their families.

Want to find out more?

Try http://www.feedingtubeawareness.org/  and/or https://www.feedingmatters.org/

I give thanks to all the families sharing their tube-feeding stories this week, and I hope one day that all children will get the right support to reach their feeding potential.

The Tactile System and your child’s eating- What do I do? Messy and Exploratory Play, stage 2

Today’s post is about how to support children to transition from dry messy play to wet messy play.

Some children will be able to move straight to wet sensory and food items to play with, but for a lot of children, that transition is a difficult one. I have recently been exploring items to help children transition into this stage:

1- Water Play

For a lot of children who find things that stick to their hands difficult, I find that their tolerance of water play is often much easier.  You can add different things to the water to extend this play scenario, like small pretend play items.  You will find lots of ideas online too for using ice as a messy play activity, but be aware that some children can experience extremes of temparature as painful.

2- Water Beads

These are my new favourite thing!  I like these because the child is putting their hands into something, as they will be with the messier play that comes next.  But water beads only really leave a little slick of water on your skin, nothing sticky.  Water beads start very small and absorb water.  Depending on the age and stage of your child, they might find the process of seeing what the beads look like before and after exciting too!

There are loads of ideas online to extend this activity.

3- Use Ziplock bags

If your child is ready to explore wetter items but not ready to touch them yet, then try putting them in ziplock bags, so they can use their hands to explore, but don’t get the stickiness factor.

You can put water beads in them, or you can fill them with cheap hair gel and put items in the gel.  There are lots of good ideas online for this activity, try Google images, Youtube and Pinterest.

4- Kinetic Sand

You can buy or make this (again, loads of examples and videos online).  What’s great about this is that it is an interesting sensory experience, but doesn’t stick to your hands in the quite the same way as normal sand.

5- Slime

There are lots of recipes for non-sticky slime online, this could be another good way to introduce the sensation of wetter items, without the stickiness factor.

6- Tools to interact with the wetter items

In a previous post on the desensitisation hierarchy, we talked about ‘interact’ being a stage of the desensitisation process.  Having a way to explore items that does not involve the hands builds confidence towards using our hands (and ultimately our mouth) to explroe food.  Make sure you have lots of ‘safe’ ways to explore the items available, like cutlery, play items, or foods that are already accepted.

 

Posts from ‘Find the Key Speech Therapy’ are intended for information.  They should not and cannot replace advice from a qualified Speech and Language Therapist who knows your child.  ‘Find the Key Speech and Language Therapy’ always advises you to seek appropriate professional support.

The Tactile System and your child’s eating- What do I do? Messy and Exploratory Play, stage 1

As a Speech Therapist working with chidlren’s eating, I spend a lot of time doing messy play.  What’s that got to do with supporting children to eat?

Your hands and your mouth are closely related.  It is very common for children who have an aversion to eating to also find it very difficult to tolerate sensory experiences through their hands (see previous post).  This is because the highest concentration of tactile receptors in the body are in and around your mouth, and on your hands.  This makes sense given the fine discrimination we need our hands to do.  And from a feeding perspective, exploring food with our hands before we put it in our mouth makes sense from a safety perspective (would you let someone put a mystery food in your mouth without a chance to get some more information about it?), and from the perspective of learning to self-feed.

In fact, using our hands in messy play is such an important stage of development (for play and language development as well as eating), that if a child has missed it, for example, because they have spent significant periods of their life in hospital, we may well need to find age-appropriate ways to try to fill this gap in their development.

For children with significant aversion to eating, supporting them to self-feed is often the best choice, as it puts them in control of when and how much they eat.  So we need to help them to tolerate using their hands more.

So, how do we start?  As a rule, I tend to try to get an idea of a baseline for what your child can tolerate, so you can pitch the sensory experiences you are presenting accordingly.  Ideally we are aiming to introduce sensory experiences that are just at the edge of a child’s comfort zone.

So, I will often start with dry messy, sensory and exploratory play (three similar overlapping types of play) first.  Many of the children I work with find dry play easier to tolerate.

Some ideas:

  • shredded paper
  • bubble wrap
  • packing peanuts
  • Everyday things with interesting textures- sponges, loofahs, small hair and nail brushes, pine cones, fabric remants.
  • dry foods-oats,rice, breakfast cereals
  • ‘Bite and dissolve’ foods (be careful- sometimes the smell of these will be off-putting to some children)

If your child has significant aversions, you often do not need to worry too much about them putting things in their mouth at this early stage, but always be around your child when they are exploring their items.  Your child may be able to explore these things by themselves, but more likely, if they have sensory difficuties, they will need you to model how to explore these items.

The important thing to remember is that this type of therapeutic messy play is about modelling, not telling your child what to do or making them do anything.  I have learned to be careful about praising children too- drawing attention to progress can make a child realise what a big thing they just did, and lead them to stop doing it.  You can do the silent eyebrow rasise of the Parent and Therapist who are inwardly dancing with joy instead!

In our next post, we will explore introducing slightly messier things to your child, and using a desensitisation hierarchy to support them and help you to identify progress.  But, for now, why not post your favourite dry messy play item below?

Posts from ‘Find the Key Speech Therapy’ are intended for information.  They should not and cannot replace advice from a qualified Speech and Language Therapist who knows your child.  ‘Find the Key Speech and Language Therapy’ always advises you to seek appropriate professional support.

 

The Tactile System and your child’s eating-What do I do? Tops tips for the feeding environment.

You may have read previous posts about the sensory systems, and what over- and under-sensitivity look like with regards to eating.  And maybe you’re thinking, ‘yes, but so what?’.  This post begins a series on practical things we can do to support children with these difficulties.

So, first off, we’ll start with tips that are useful for most people.  If your child has difficulties that are not as severe, they might be enough to make a big difference.  Future posts will get more in detail into therapy techniques for more severely effected children.

The biggest thing you can do for your child’s eating is to make efforts to make the eating environment less stressful.  You might need to start by addressing things about your environment that don’t even involve food.

  • If your child has a negative reaction to sitting at the table:
  • Make sure you do other things around the dinner table and/or in their chair that they think are fun.  If they associate their chair and meal times with stress, then their negative responses will kick in way before the food gets there. Try having a time every day where they play in their chair, or you sing songs, or look at a book etc etc.  Let them choose the fun thing- our feeding chair is not a place where we want children to feel powerless.
  • Read about the ‘division of responsibility’ model (see previous post).  It is not your job to make your child eat, but to offer them opportunities.  I know this is easier said than done, but putting power back into balance in the mealtime dynamic can go a long way.
  • Offer foods that you know your child will eat, alongside other foods.  Starving children into eating will usually not work if your child has complex develeopmental and sensory issues.  If it does work, it will often come at a heavy cost with regards to your relationship, and your child’s relationship with food.  Offering a food you know a child will eat will bring down your stress,and their’s, and that’s a good thing.
  • Offer foods you actually like and eat yourself.  It is amazing how often we offer foods that we don’t like ourselves, beacuse we believe them to be good for us.  Your child is not an article in a magazine about nutrition, they will learn to eat the foods they see the family eating.  If you don’t eat kale, then don’t focus your time on it (NB I am not a dietitian- obviously making efforts to eat a healthy balanced diet are a  good thing, but it’s about being realistic).
  • Try and get everyone on the same page.  If you are taking a low-stress approach, but your Partner/Grandparent/childminder etc is putting the pressure on, this is less than ideal.  Our deeply-held views about food are often instinctive, and a child who is not eating will often trigger deeply held unspoken views (you shouldn’t waste food; children who don’t eat are being badly behaved etc).  Make efforts to help people see things from your child’s perspective.  However, if the discussions in themselves are causing more stress, maybe it is more appropriate for you to just control the interactions you can, and let the rest go.  People may well change when they see your way of doing things working.
  • Think about how you serve food.  Giving your child more control can really help the dynamic shift.  Think about serving food ‘family style’ (on shared plates on the middle of the table), and supporting people to serve themselves.  People can take as much or as little as they like, they can try small portaions of new things, and it makes it less easy to track what volumes have been eaten (a good thing, generally speaking!)
  • For children who do not like food touching (there are lots of good reasons for this, which we’ll talk about in another post), consider a divider plate.  If your child knows the foods don’t touch, they will be more able to relax and eat.
  • Check your own stress levels.  If mealtimes represent stress to you, then get the support you need to be able to bring your levels down.  Find a good feeding therapist, friend, counsellor, online support group etc who really gets it and is supportive.  Bringing your own stress down even a notch at mealtimes will support your child.
  • Educate yourself about your child’s developmental stage and their sensory processing.  It is really common for the stress levels at a family mealtime to drop massively once we know that a child is not showing these behaviours on purpose, or as a reaction to us personally.  Keep your eyes out on this blog for information, and for links to high-quality resources.

Posts from ‘Find the Key Speech Therapy’ are for information only.  They are not intended to, and cannot, take the place of advice from an appropriately trained Speech and Language Therapist who knows your child.  ‘Find the Key Speech Therapy’ does not take responsibility for the use of advice without appropriate professional guidance. 

 

The Tactile System and Your Child’s Behaviour- Oversensitivity

So, in my last post I explained a little about how the tactile system is structured.

How do differences in the way your child processes touch sensation show up in their behaviour?

Your child’s sensory processing tendency may be towards over-sensitivity to touch (also called hyper-sensitivity), or towards under-sensitivity (hypo-sensitivity).  This post is about hypersensitivity.  A difficulty in sensory processing may be apparent in a child’s motor skills, and/or in their emotional and behavioural responses.  There are many areas in which tactile difficulties might show up.  Because my posts are more feeding-oriented in origin, I’ll focus a little more on signs you might see in that area, this list is in no way exhaustive.

Over-sensitivity:

  • May eat a restricted diet, and especially restrictive with regards to food texture.  Often ‘stuck’ on smooth foods.  Especially finds lumpy textures difficult.
  • Dislikes having their hands messy.  If they will get their hands messy, may ask to have their hands wiped quickly or frequently.
  • If they will join in with messy play, may only use the very tips of their fingers to explore.
  • May not mouth toys.
  • May be distracted by the visual appearance of foods- focussed on packaging, eating only particular brands, rejecting foods if they are presented differently, rejecting foods if sauce has touched them, or if foods have touched each other on the plate.
  • May be distracted by, or controlling about clothing textures- e.g. labels, long sleeves, seams.
  • May dislike having their shoes and socks off, or exploring with their feet, e.g. walking on sand or grass
  • May dislike having hands/face/hair/teeth brushed/washed etc.
  • May reject foods based on temperature
  • May react excessively to everyday events like being brushed up against
  • May exhibit responses to the above that you would consider out of all proportion- distress, anxiety, anger, silliness, controlling behaviour
  • May have poor fine motor, oral-motor and/or gross motor skills
  • Fearful or rejecting of being touched/hugged

If your child is showing these signs, they might benefit from working with a Speech and Language Therapist with the appropriate sensory training, and/or an appropriately trained Occupational Therapist.

Look out for posts about supporting children with over-sensitive tactile systems with their feeding, coming up soon.

Posts from Find the Key Speech Therapy are intended for information.  They are not inetnded to, and cannot, take the place of advice from an appropriately qualified Speech and Language Therapist who knows your child.  Find the Key Speech Therapy does not take responsibility for the use of any advice without appropriate professional guidance. 

 

The Touch Processing System

This article will be looking at the touch processing system in a bit of detail.  If you’re anything like me, you like to know why something works before you’ll do it.  So this introduction to the touch system will give the background to future articles that will talk a bit more about practical strategies to support your child with difficulties with touch (tactile) processing.

I think that knowing a bit about how the brain processes touch helps Families to be more independent of their Professionals in choosing the right strategies for them.  With the right knowledge, you’ll understand why a strategy might work, and how to adapt it.

Your tactile system has receptors that take in touch information through the skin.  It’s the largest sensory system in the body, and so if you have difficulty with processing touch, it has the potential to effect lots of different areas of development.  I’m going to mainly talk about children who have emotional over-reactions to touch (and therefore food too).

sunblock-skincare-healthy-skin-heart-161608

The touch system has two branches, the discriminative and the protective parts.

The discriminative system helps us with precision information.  We need it to explore our food and toys, and develop good manipulation skills with our hands for things like writing, turning the pages of a book, or doing a puzzle.

kids-girl-pencil-drawing-159823

The discriminative system carries a few different types of information, that you might not think of as being part of the touch system:

  • Discriminative info like texture
  • Deep touch pressure
  • Vibration
  • Proprioception (more about this in another post)

The protective system is designed to keep us safe on a much more basic level.  It is the system that will make you jump when an insect lands on you, make you shiver when there is a sudden cold draught, or think about running away if someone brushes against you in a dark alley.

pexels-photo-169357

The protective system carries information about a few things too:

  • Light touch
  • Pain
  • Temperature

The protective system, unlike the discriminative system, sends branches out to the parts of the brain that make us switch focus and be alert, and react by running away, putting up a fight, or freezing.  All useful things in the right situation.

But sometimes children (and adults) have an overactive protective system, and/or an underactive discriminative system.  So they are triggering strong protective behaviours in response to touch sensations that would not bother the rest of us.  For example, getting food onto their hands or into their mouth can trigger genuine fear and anxiety.  Eating foods of a certain temperature might be an issue.

Luckily for us, our brain isn’t very good at processing information from both parts of the tactile system at the same time.  If you want to see this in action, then next time you bang a knee (generating a pain signal, processed in the protective system), then rub it (deep pressure, processed in the discriminative system), and it won’t hurt so much.

We can use this trick of fate in therapy activities and strategies for your child by:

  • Supporting their discriminative skills in our choice of activity
  • Using deep touch pressure such as massage
  • Using toys that vibrate (but not if they only have light vibration or the brain thinks it is light touch)
  • Doing activities that get us moving our muscles (proprioception)

So, we might build more opportunities to use the discriminative pathway into a child’s day, and especially before we ask them to push themselves to do something difficult in their feeding, like messy play.

Have you got any examples of touch activities that your child finds difficult?  Maybe they make more sense now that you know more about the way the brain processes touch?  As usual, post your comments and questions!

Posts from Find the Key Speech Therapy are intended for information.  They are not intended to, and cannot take the place of advice from an appropriately qualified Speech and Language Therapist who knows your child.  Find the Key Speech Therapy does not take responsibility for the use of any advice without appropriate professional guidance. 

Higher or Lower? Understanding your child’s sensory processing tendencies

In a previous post, we’ve talked a little about three of the 7 sensory systems that your child uses to help make sense of their bodies, learn to move and have appropriate emotional responses to their environment.

These posts are focussing on the vestibular, proprioceptive and tactile systems, because they are so fundamental to the function of all the other sensory systems, and all the other learning that your child will do.

Let’s talk a little more about the ways in which children can experience their sensory worlds differently.

Your brain is a clever organ, that, beyond just taking information in and then sending instructions out to the body, also regulates the flow of information coming in so that it is not overwhelmed, but also not understimulated.  This process is known as modulation.

For example, when you are reading this, you are getting information from your body to let you know whether you are standing or sitting.  If your sensory processing is well modulated, you will get ‘just enough’ information about your position- not so little that you have to keep focussing on where your body is and are unable to read- not so much that you are in constant fear of falling down, and stressed by the small changes in body position that we all make to stay upright.

People with sensory modulation difficulties have difficulty getting a ‘just right’ amount of information.  They may get too much or too little.  This is extremely distracting and can be distressing.  These sensory processing tendencies can interfere with all the other things they want to do, to the extent that it can interfere with a child’s development.

So- is there an easy way to tell if your child is getting enough sensory information?  Sadly, it is not that simple.

Children will seek to adapt their own behaviour to their sensory processing tendencies. A useful way of looking at this is Winnie Dunn’s 1997 model of sensory processing:

Dunn's Model of Sensory Processing (1997)

If a child has a high neurological threshold, it means that they need lots of sensory input to happen before the message about the sensation gets passed to the brain.  They would not notice a sensation very easily. Some children would take a passive response to this- the information is not getting through, and they don’t do anything to adapt to this situation. A child would need lots more sensory stimulus than normal to show a response.

Some children who have a high neurological threshold adapt to this need for more sensory information with an active response.  They are ‘sensory seekers’- moving more, cramming more into their mouths etc.

If a child has a low neurological threshold, then they only need very little sensory information to pass on sensory information to the brain.  As a result, these children are likely to be easily overwhelmed.  Again, they can have a passive response to this- these children may look like they are not doing much, but in fact they may be completely overloaded and unable to escape.

Active responses to a low sensory threshold would involve behaviours such as trying to avoid or escape sensation (for example, avoiding getting their hands dirty, becoming distressed at having to have socks on).

Passive responses to either under or over-sensitivity can look similar on the surface.  Active responses to under or over-sensitivity can look similar.   But our approaches to supporting that child will be quite different. In addition, your child might be over-sensitive to some types of sensation, but under-sensitive to others.   This is why it is important to get Professional help if you suspect a sensory modulation difficulty.

For a really great video on this, look for ‘A Child’s View of Sensory Processing’ on Youtube.

Occupational Therapists (OT) are traditionally associated with sensory assessment.  Not all OTs are trained in sensory assessment, and so it is important to have access to an OT who has the appropriate qualifications.  More and more though, other therapies such as Speech and Language Therapy and Physiotherapy are also training in this area, as sensory processing has such a wide impact on all areas of development.

In our next post, we’ll be looking in a bit more detail at the tactile system, including the kinds of behaviours that might be suggestive of under- or over- sensitivity in this system.

Posts from Find the Key Speech Therapy are intended for information.  They are not intended to, and cannot take the place of advice from an appropriately qualified Speech and Language Therapist who knows you child.  Find the Key Speech Therapy does not take responsibility for the use of any advice without appropriate professional guidance.