Tube feeding your child: A guide for parents to care for your tubie
Written By Kate Annat, APD
If you are looking for a dietitian, outside of the hospital, that has all the skills of a specialist hospital then Cubs Paediatric Dietetics is here for you. We will work together in suggesting the way forward with feeding your tubie that suits your child’s medical condition and feeding method.
I have a vast experience working with infants and tube feeds, including those with allergies, feeding difficulties and managing tube weans. Additionally I have worked with children of disability from 0 - 18 years of age with a range of medical conditions including gastroenterological and surgical disorders. I can support with increasing oral intake as well as commencing blended diet.
Together we'll create a plan to your child thriving on the tube! Whether this is on formula, breast milk, blended diet or whole food diet or even with Wholesome Blends!
I can support you with whatever stage in the process your child is experiencing. Whether this is mixed oral and tube feeding, tube weaning, full tube feeding or blended diet.
What type of tubies do I work with?
Tube fed infants:
As an experienced NICU dietitian I have worked with many types of infants who have required a nasogastric tube to support growth. Your child might have left the NICU with a tube inserted to support growth whilst they mastered breastfeeding. They might have also been diagnosed with a congenital condition on the ward and will be going home with a long term tube.
Alternatively your child may be a few weeks to a few months old and their growth has slowed and your paediatrician has recommended a feeding tube. In this case we use the time to improve growth, understand better the cause of their feeding issue or even rule out allergy. Once their growth is established and the cause of the feeding issue determined then we can work on your child's tube weaning plan.
Tube fed children of disability:
As mentioned earlier I have worked with all kinds of children who may have an unsafe swallow and accordingly require a tube. Your child might also have a safe swallow but are unable to meet their daily needs orally and require support with a feeding tube.
You may be reading this page as a mother wanting support with transitioning from NGT to gastrostomy, transitioning from formula feeds to blended diet, increasing oral intake and reducing tube feeds or wanting to wean their child off the tube.
I have experience working with children with disabilities with complex surgical histories (fundoplication, gut resections, hirschprungs or G-J tubes), malabsorption (from surgery or allergies) and those with neurological conditions (HIE, hydrocephalus, epilepsy and cerebral palsy).
The advice on this page is applicable to all these kiddos with tubes. With the aim to providing you with some guidance on how a dietitian can help, what the common tube related tolerance issues are, blended diet tips and advice on tube weaning.
Common feeding tubes are:
A feeding tube is a small, soft, plastic tube placed through the nose (NGT) or through the stomach (PEG/ gastrostomy) or into the intestine (Jejunonstomy/ G-J tube). These tubes are used to provide nourishment to your child whether they are fully tube fed or to support them whilst returning to orally eating whilst trying to tube wean your child.
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A nasogastric tube - often called an NG-tube. This tube is inserted through the nose and runs down to the stomach. It is used for short term tube feeding.
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A nasojejunal tube - often called an NJ-tube or Transpyloric (TP). This tube is inserted through the nose and runs through the stomach and down to the jejunum (small intestine).
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A gastrostomy tube - sometimes called a G-tube. This tube is inserted into the stomach through a small opening made in the abdominal wall. They include a PEG (percutaneous endoscopic gastrostomy) and low profile device/button (balloon and non-balloon).
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A jejunal or jejunostomy tube/button (skin level device) – sometimes called a J-tube. This tube is inserted into the jejunum (small intestine) through a small opening in the abdominal wall.
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A gastrojejunal or gastro-jejunostomy tube/button (skin level device) – sometimes called a GJ-tube. This is a longer tube inserted through the gastrostomy opening and passed down into the jejunum (small intestine).
I have experience in supporting families with all types of tubes for their little one.
How can a Paediatric Dietitian help with your Tubie?
I know that your child's quality of life depends on their daily needs and personal care. That’s why I endeavour to provide tailored feeding plans your child needs to thrive and feel comfortable. I offer support regarding providing the best feeding method that suits your Cubs’s tube. In this way, we help your child and their loved ones find the best method for your family.
We can offer support on using enteral formulas to achieve your child’s growth needs. Plans that factor in allergies or malabsorption. Supporting with reflux and constipation to minimise these issues that can arrive from tube feeding. Children with disabilities often encounter one if not all of these issues on a day to day basis and I will find the best formula/ food/ blend to improve on all of these symptoms.
Here is what we do:
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Book an appointment. We’ll discuss your child’s full history, their symptoms and answer all your questions. We can do this online, with a telehealth appointment (online video consultation), or in person at my clinic (Wednesdays only). Address is 1 Zeehan Street, Wavell Heights 4012.
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Get a customised nutrition plan. We will cover these topics in consultation 1
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Nutrition history from birth until today
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Assess growth
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Review feeds tolerance - especially with vomiting, constipation and reflux
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Assess calorie, protein and fluid requirements
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Assess if feeding plan reflects requirements
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Discuss formula/ feed choices that aim to make your tubie comfortable again
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See your child thrive and their confidence grow. When their body is fed and their digestion is working as it should, you will actually see improvements happening overtime. Now their body has the tools to reach its potential!
How can I improve my child's tolerance of tube feeds?
Tube feeding can be really tricky as it is all about the perfect balance of managing your child's symptoms with helping them to grow and thrive. Often children with disabilities encounter issues of reflux, constipation and vomiting. It is important to understand your child's medical history in order to resolve each problem individually. Let's look at some of the common issues children experience with tube feeding .
Is constipation common for tube fed children?
Some children with disabilities often have low tone. What this means is that children with low muscle tone may need to put in more effort to get their muscles moving properly when they are doing an activity. Equally our entire intestinal tract is lined with muscle, which results in reduced contraction. This can be what results in constipation, even when your child's stools are still soft. If their bellies are too full with stools this can result in poor feed tolerance and some reflux.
Here are a few options that we will explore:
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Trial a period of osmolax or movicol and I will guide you on dosages and how to wean off from this medication
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Assess whether an underlying allergy is contributing to the constipation and advise on alternative formulas or foods over a 1 month trial period
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Trial a hydrolyzed feed as these absorbs faster in the body which can improve reflux and constipation
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Consider a blended diet as whole foods improves stools consistency by using natural fibres as a bowel softener.
Is it normal for my tubie to be experiencing vomiting and reflux?
Like what I said earlier about constipation and low tone, reflux and vomiting can also be related to low tone. What this means for your child is vomiting can be more likely because the muscles that normally keep food contents in the stomach aren't doing their job as well as they could so the food/ formula can reflux back up.
We have what we call a sphincter between our stomach and oesophagus. This sphincter normally closes and remains closed once food moves into the stomach. When you have low tone the sphincter, which is a type of muscle, might not be closing all the way shut which makes it easier for the feeds to reflux back up and make your child uncomfortable.
This is not the only reason why your child might be vomiting so in a consultation with me these are the things we would review to assess if this improves the symptoms.
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Review constipation as a factor as a full intestine can lead to reflux and vomiting, a period on osmolax will be discussed
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Assess for overfeeding as excessive calorie intake in the tube feeding plan can cause vomiting
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Assess whether an underlying allergy is contributing to the reflux and vomiting and advise on alternative formulas or foods over a 1 month trial period
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Assess feed volumes and rates and alternative concentrated feeds to improve vomiting
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Consider a blended diet as the thicker consistency of food increases difficulty of reflux
Can tubies eat regular food with a PEG or gastrostomy?
In this instance you have two options. Firstly if you have a speech pathologist who has said it is safe for your tubie to eat and drink orally then absolutely you can eat orally as well as through your tube. I will help your family by working out how much your child is able to eat then work out a tube feeding plan that allows them to continue eating home family foods. Also I can help families by supporting your child to increase their oral intake so we can also reduce reliance on the tube! See my page on fussy feeding!
Secondly, if you've been advised by your medical team that it's unsafe for your child to swallow food and fluids you have the option of blended diet! Blended diet is a fantastic way of feeding your child as it gives your family some normalcy at the dinner table. The second bonus of blended diet is that it is often better tolerated than standard formulas. I have seen blended diet work wonders for families, decreasing the occurrence of vomiting, reflux and helping relieve constipation.
Whatever stage you are at with your tubie I can cater to your families needs whether you want just one blend in the diet, full blended diet or just some recipes.
For more information on blended diets please refer to my comprehensive guide - Blended Tube Feeds (BTF) - How to include BTF into your child's feeding routine.
How to tube wean your child?
I have supported a variety of patients with the tube weaning process. This a very individualised assessment and would need to be tailored to your child as there is not a one size fits all method. But how I make this assessment is this:
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Discuss with medical and speech pathology team on swallow safety to determine if your child can tolerate oral eating
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Review the medical history to asesss why your child is not eating - this could be anything from a bad allergy, poorly controlled reflux, laryngomalacia, a congenital condition, poor breathing and airway (like enlarged tonsils or adenoids) or an oral motor delay
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Then I will provide your family with calorie counted plan to support your child to feed themselves!
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I will ensure you have a talented community speech pathologist and occupational therapist to support with oral motor skills and appropriate seating and cutlery
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I will also reduce your child's reliance on the tube as their oral skills and intake improve
How long will it take to tube wean my child?
Great question. As I said it is too individualised to tell you a number as that would be unfair. But I can give you some examples of different children with different medical histories and their stories of tube weaning.
Patient 1 - 11 months old.
Had a history of allergy which resulted in poor growth and an NGT was inserted. They also had laryngomalacia which affects a child's breathing. So this child wasn't growing from the diarrhoea and had difficulty eating as breathing was tricky. When they met me they were still using the tube using Neocate LCP and were orally eating.
I could tell from counting their calorie intake that they were very close to being 100% orally fed so instead I switched the formula to Neocate Junior which has more calories in it than the LCP and voilla, they were meeting their requirements. The tube came out in 1 month after two appointments and has been growing well since. I continued to review them to support with advice on improving their oral skills and provided a high calorie feeding plan for their allergies.
Patient 2 - 5 months old.
Had a history of allergy and the tube was inserted at 3 months due to poor growth. When I met the family they were also not tolerating the tube feed and had awful reflux. Step 1 here is to make sure the child tolerates the feed so they are comfortable before we can discuss oral eating. So we concentrated the calories in the tube feeds and made them smaller and more frequent and after 1 month the child stopped vomitting. Hurrah.
This child also had some airway red flags so I encouraged them to see an ENT. They were then diagnosed with laryngomalacia as well as some considerable tongue ties which explained why they weren't tolerating their feed. This is because when breathing is hard feeding is harder. This little one now needs to wait for surgery to correct these issues. Additionally I referred this little one to a speech pathologist and occupational therapist for feeding assessment to support the transition back to bottle feeding and oral feeding.
At present this little one is 7 months old and is still tube fed but we are working on strategies to maintain oral skills whilst we are awaiting the surgery. In this case, because I now understand the medical history, I am certain this little one will wean off the tube and be able to bottle drink and orally eat once we correct the underlying problems affecting feeding.
Patient 3 - 6 year old.
Has global developmental delay as well as a congenital condition that affects their tone. This means they can fatigue easily and have deficits in oral motor skills. I met this boy when he just had a PEG inserted. He could still orally eat but because of his fatigue sometimes he was too tired to eat 100% of his foods. I work with his local speech pathologist to make sure he is safe to orally eat which he is! Then in our appointments we change his tube feeding plan to match what he isn't receiving orally. We discuss eating foods that are easy to eat to help meet his calorie needs but also suggest foods that develop his feeding skills.
At present this child has a flexible tube feeding plan which means when he eats well he does not need the tube. In this scenario I cannot say when that tube will come out as his medical condition affects his ability to eat each day differently. But this is still our goal and the family are happy that they no longer need to stress about his weight and what he eats so they can finally relax at mealtimes!
So what I am trying to say is that every child is different and unique and it will depend on their medical history as to when that tube can come out. But what you can do is give me a call! I encourage all my enquiries to call me before their appointment or even before they decide to make an appointment. This way we can set our expectations on when that tube might come out. Rest assured I love solving these problems for families and figuring out why that tube is in and how we can worked towards getting it out.
How can a certified paediatric dietitian help?
I established Cubs because it’s my passion to bring support and help to the many families dealing with feeding challenges. Throughout my years of clinical experience, I’ve helped many children who require tube feeding. It might sound daunting, but don’t feel like you have to do it alone. When we work together, we'll find solutions that are both short term and long term focused. And importantly, my job is to bring comfort to your little one as they grow and thrive.
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Book an appointment: in-person or online video call
I’ll meet with you and your child via telehealth or face to face. We’ll discuss your child’s full history from birth until today and answer all your questions.
Get a customised nutrition plan
You’ll receive a nutrition plan that meets your child’s specific needs.
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See your child thrive and their confidence grow
As your child’s digestion improves happiness will return to your mealtimes.
FAQ's: Your questions on tube feeding answered.
How long can a nasogastric tube remain in for?
Typically an NGT is intended to be short term. Ideally your tube should be changed every 3 months. Each tube is different so you should check your manufacturers suggestions on the label.
How often should I get my gastrostomy tube changed?
Ideally you will want your tube changed every 6- 12 months. This will also depend on what tube you had initially placed for your child.
Initial Gastrostomy tube inserted:
The initial gastrostomy tube will usually start to degrade within about 12 months and will need to be replaced. This replacement is usually a planned procedure just like the initial insertion. Initial type gastrostomy tubes are unlikely to fall out spontaneously, but if they do, you will not be able to reinsert it yourself. You will need to present to your local emergency department.
Low profile or long tubes with balloon:
A gastrostomy tube is more likely to fall out if it is a balloon-type. The old tube can be reinserted and balloon inflated or temporarily taped into position if the balloon has burst. This will prevent the stoma from closing over. Seek advice from the PEG clinic regarding replacement gastrostomy device and reinsertion. If you reinsert the tube, seek medical advice before recommencing feeds or administering medicine.
Non-Balloon low profile tubes:
Low profile devices without balloons (eg MiniOne non-balloon/cage® or Entristar®) can become partially dislodged or fall out. You may notice redness and swelling around the tube, with slowed flow rates and discomfort, particularly during feeds. The tube may have “popped up” above the skin. Rotating the device may be painful. Seek medical advice if you suspect partial dislodgement. In the event that you are unable to reinsert your child’s low profile device it is recommended that you present to your local hospital Emergency so that they can reinsert the tube or insert a catheter to keep the stoma open until a tube can be reinserted.
Check out this booklet from the RCH Melbourne 'Gastrostomies - all you need to know'.
What is the most common problem with feeding tubes?
Accidental removal of initial PEG insertion:
A replacement tube should be re-inserted within 4hrs. A trained Person can insert a balloon long tube or low profile tube or use a Foley catheter. Seek medical advice before starting feeds.
Balloon tube falls out:
If balloon is ruptured, the tube will need replacing. If there is no water in balloon, replace water and monitor volume to see if balloon is ruptured or has a slow leak. Reinsert the old tube (even if the balloon is ruptured) and tape to secure if required or otherwise, if available, insert a new tube
What is the best blender for blended diet?
Tube damage:
Contact your community stomal nurse (Children's Nursing QLD or stomal nurse/ PEG clinic of local hospital)
Perished or deterioration of tube:
You will need to contact your stomal nurse for replacement. Some preventative measures include the following. Wash and care for tubing as instructed. Flush gastrostomy tube with water before and after every feed. Also before and after administration of medication. Clamp in alternating positions, avoid frequent kinking of the tube at the top of the retention disc and attend PEG clinic appointments to change the tube as required.
Who in the community can support with my G-tube?
I love Children's Nursing QLD. They used to work at the Children's Hospital in Brisbane as stomal therapists. They saw a big gap in the support families had in the community and decided to create a service themselves. They do face to face, travel outside of Brisbane, phone and video calls, across Australia, to offer support on managing that tube.
You should have also received access to a stomal clinic once your tube was inserted and contact details to your hospital stomal nurse to help with issues of tube damage or changes.
Availability &
Location
TUESDAY & WEDNESDAY
Face to face & Telehealth
9 am to 4 pm
Wavell Heights Clinic
1 Zeehan Street, Wavell Heights
THURSDAY & FRIDAY
Telehealth ONLY
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