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Nutritional
STRATEGIES

Nutrition – Nutritional Strategies

As a parent, you want to provide the best nutrition for your child, as well as facilitate enjoyable mealtimes with all the family.


However, children with cerebral palsy (CP) may have specific nutritional needs that need special care, depending on the severity of their physical impairment and the feeding difficulties.

For further information, check out the section related to feeding difficulties.


Knowing how and what to feed your child is yet another challenge to overcome; but, before you know it, it will become an achievement!


You are in search of answers and reassurance. We are here to help you get up to speed and to accompany you during this challenging period.


Usually, following diagnosis, you will discuss your child’s nutritional needs and plans with your doctor and nutritionist or dietician. Together with your healthcare professional, you will identify the most appropriate nutritional solution for your child.


If you have any questions or doubts, talk to your doctor. It is important that you fully understand the reason why your child needs special nutritional support and how to make things work.


Before trying something new or changing your child’s feeding routine, check with your healthcare professionals. They will guide you and help you adapt according to your child’s specific needs.

In the following sections, you will get familiar with possible nutritional strategies or solutions for children with CP.

Thickeners can be your go-to solution


A large number of children with cerebral palsy (CP) suffer from dysphagia, and thus cannot tolerate liquids. Thickeners can be a solution to modify the texture and to help them take in the required liquids.

Juices and/or soups are examples of liquids that can be thickened. Your healthcare professional will recommend the exact amount of thickener needed to get the desired consistency.

Thickened liquids can have different consistencies:1


“Nectar-thick liquids” are easily pourable and have a syrup-like texture

“Honey-thick liquids” are thicker and less easily pourable. They resemble a custard-like form of liquid.

“Pudding-thick liquids” are not pourable.

A speech pathologist will determine the most appropriate consistency for your child.


→Click here to watch the full video in our real stories section

References:

  1. NHS, Appropriate prescribing of thickeners for dysphagia in adults, PrescQIPP, Bulleting 100, 2015. Available at: https://www.prescqipp.info/thickeners-for-dysphagia/send/169-thickeners-for-dysphagia/1939-bulletin-100-thickeners-for-dysphagia

Oral nutritional supplements complement the diet


When a child is losing weight, supplements may be necessary to complement his/her meals and to ensure an adequate nutrition. If your child can be fed orally, this solution can help you to make sure your child is getting all of the nutrition he/she needs. There are different types and flavours of Oral Nutritional Supplements (ONS). You can even prepare different recipes to make them more appealing to your child and ensure compliance. Ask your doctor for advice.


→Click on this link to watch the full video in our real stories section

Tube feeding doesn’t have to be scary

Tube feeding is a way of getting nutrition through a tube by using a liquid form of diet.


Healthcare professionals suggest that tube feeding should be considered when a child is unable to meet his/her individual nutritional requirements and takes more than 3 hours to eat per day.1-3


The decision-making process is very complex, and we encourage you to communicate with your healthcare professional to better understand and adapt to your child’s nutritional needs.


Tube feeding can be a temporary solution until your child gets better and gains weight, or it can be a permanent solution, depending on your child’s needs. Remember that sometimes, even if your child may be able to eat, tube feeding would still be recommended to ensure he/she is getting all of his/her nutritional requirements.


The decision to start tube feeding does not usually need to be made quickly. You will be given time to consider different options and to evaluate the pros and cons of including tube feeding in your daily routine.


There are different locations and routes through which a feeding tube can be placed.



Below is a brief summary of the different tube feeding routes:4

NG and NJ tube feeding

Nasogastric and Nasojejunal tube feeding.

These form of feeding include a tube that passes through the nose, down the throat and oesophagus and then into the stomach (NG) or small intestine (NJ).

It may seem scary and troubling at first. But, with time and experience, you will get the hang of it and feel confident that your child is getting the right amount of nutrition and maintaining a healthy weight. You will also reduce feeding time dramatically, relieving so much of the stress and frustration involved with feeding. This will free up more time for other daily activities with your child.


→Click on this link to watch the full video in our real stories section

PEG and PEJ tube feeding

PEG:

The feeding tube is inserted through the skin directly into the stomach. The technical term of PEG is: Percutaneous Endoscopic Gastrostomy.

PEJ:

The feeding tube is surgically inserted into the middle section of the small intestine (the jejunum). The technical term of PEJ is: Percutaneous Endoscopic Jejunostomy.

At first, this may seem very invasive and frightening. However, you can think of PEG/PEJ- tube feeding as an umbilical cord.

Inspired by Miriam, Yehoshua’s mum


Your child is getting all of his/her nutrition through this lifeline.

These forms of feeding are very discreet and convenient, as you can feed anywhere quite easily. It is a quick, safe and reliable form of feeding that allows you to track the amount of food and hydration your child is receiving.


→Click on this link to watch the full video in our real stories section

There are different ways to deliver tube feedings and different types of feeding schedules, depending upon what your doctor has prescribed for your child.

Nutrition can be delivered continuously or in multiple deliveries (intermittent nutrition).

Continuous nutrition can be done by gravity or using a pump.4

  1. By gravity : A bag filled with formula or the pack of the formula hangs above the child to let the formula drip down into the tube and then into stomach. Roller clamps can be used to control the rate of flow.
  2. Pump Feeding: A feeding pump can be programmed to run at whatever times and feeding rates you choose to deliver bolus feedings. Make sure your healthcare professional demonstrates how to use the pump before you go home.

Intermittent nutrition can be done by gravity, using a pump or using a syringe.

  1. Intermittent feeding is a type of tube feeding that provides a certain amount of formula over a short amount of time (usually 30-60 minutes), and is typically provided several times per day.
  2. With a syringe: formula is poured into the syringe, then the plunger is used to push the food directly into the tube.

It may be difficult to understand now, but as you gain more experience, tube feeding can and will become second nature.1 Even though your child is being tube fed, being included in family mealtime and social events that involve food is just as important for your child as it is for you and your family.1 Speaking about tube feeding with your child will help alleviate any confusion and will allow your child to feel more reassured and comfortable during mealtime.1

There is also a wide range of formulae to choose from.

Each formula is adapted to a child’s specific needs (e.g.: caloric content, fibre content, mineral content, etc.), and some are even made with ingredients from real food!

Click on the Types Of Formulae section to better understand the different types of formulae available for feeding.

As you continue to tube feed your child at home, it’s natural to have questions, or to need some help. Your child's healthcare team can help you answer questions such as: 4

  • What can I expect from the tube feeding experience and the different tube feeding options available?
  • What type of equipment is needed and how do I set it up?
  • How do I know if my child is getting enough nutrition?
  • How do I know my child is having feeding intolerance?
  • Can my child be experiencing allergic reactions?

Mealtime is an important opportunity for socialisation and development, and a part of life that children should be involved in and enjoy from an early age. Even though your child is being tube fed, being included in family mealtime and social events that involve food is just as important for your child as it is for you and your family.4

Your child's healthcare team is there to make sure that your home tube feeding experience, for you and your child is as comfortable and problem-free as possible.4

If your child is being tube fed and not taking anything by mouth, it is important to maintain oral stimulation. This is a normal part of feeding and promotes growth and development. It allows a younger child to develop skills for eating and swallowing, and helps an older child who has already learned these skills to maintain them while they are being tube fed.

Talk to your child's healthcare team for ideas about providing your child with safe opportunities to chew or suck.

When people ask when your child is going to stop using a tube to eat, it’s fine to say, “We don’t know.” For now, the focus can be on the immediate goals. Learning how to master a set-up technique. Transitioning from one type of formula to another. Growing stronger and taller every day. Thriving!

We advise you to speak with your child's healthcare team for guidance on managing feeds away from home, based on how your child is being tube fed and the feeding schedule. Your healthcare team will also help you to create a feeding plan for your child if they are attending school.

With tube feeding, there are many markers of progress! “Wins”—both big and small—are worth celebrating.4

→Click here to better understand the different types of formulae available for feeding

 

References:

  1. Romano C et al. European Society for Paediatric Gastroenterology, Hepatology and Nutrition Guidelines for the Evaluation and Treatment of Gastrointestinal and Nutritional Complications in Children With Neurological Impairment. J Pediatr Gastroenterol Nutr. 2017;65(2):242-264.
  2. Penagini F et al. Dietary Intakes and Nutritional Issues in Neurologically Impaired Children. Nutrients.2015;7(11):9400-15.
  3. Sullivan PB. Gastrointestinal disorders in children with neurodevelopmental disabilities. Dev Disabil Res Rev. 2008; 14(2):128-36.
  4. https://www.nestlehealthscience.us/mytubefeedingkid

Which formula to choose?

There is a wide range of tube feeding formulae available for children. Formulae come in a variety of formats and packaging. They can be based on casein or whey protein. Whey based formulae may be easier to digest and may offer an improved feeding tolerance.1

Your healthcare professional will consider your child's medical diagnosis, unique nutritional requirements and the feeding schedule when recommending a formula. Tube feeds should only be used under medical supervision on a recurring basis.

Interestingly, some parents say that their child does taste the tube feeding formula, as an aftertaste or the result of regurgitation or burping, and may want a flavoured formula.

Here are some examples of different types of formulae:2

Standard

A standard tube feeding formula is a formula that is designed for children who have normal digestion and will include all of the nutrients required for a growing child. Some standard formulae can be used for both tube feeding and oral feeding, and some contain added ingredients, such as fibre, to promote regular bowel movements.

Peptide based formulae

Peptide based formulae are nutritionally complete, which means they contain all of the essential nutrients required for a growing child. They are different because they contain some nutrients, such as proteins, that are "broken down" into smaller components called peptides to make them easier to digest.

They should be used under medical supervision.

Blenderised with Real Food Ingredients

Blenderised formula can also be made at home with real foods that are pureed in your blender. Another option is to use a commercial formula as a base for a blenderised diet. A variety of other foods, including fruits, vegetables, yogurt or cooked meats, can then be added to the mixture and blended. The "recipe" — or the various ingredients used — should be reviewed by a registered dietician to ensure that the child's nutrient requirements will be met. Vitamin, mineral or protein supplements may be necessary to meet nutrient requirements.

Commercially prepared blenderised formula is made from real food ingredients such as chicken, vegetables and fruit, along with added vitamins, minerals and other nutrients. These formulae may be suitable for children who have difficulty digesting a standard tube feeding formula, or for children who will be tube feeding for a long period of time.

Rest assured that all tube feeding formulae are specially formulated to provide all of the nutrients needed to support a child's growth and development, in a form and amount that your child can tolerate.

Because a "complete feeding" of formula provides all of the nutrition your child needs, tube feeding can replace feeding by mouth completely — even though your child may also be taking some food or liquid by mouth.

Tube feeding formulae are also considered complete nutrition because they contain the protein, carbohydrate, fat, vitamins, minerals and water to help prevent nutrient deficiencies and to support your child's growth, development, and special nutrition needs. The type and amount of each of these important nutrients will vary in different formulae, so your healthcare team will have many options to meet your child's needs.

If you suspect that your child is not tolerating a formula, work with your doctor or dietician to find the cause. Sometimes it can be as simple as a change in formula. Certain formulae are specially designed to help improve tolerance, which can help relieve digestive symptoms. Your doctor or dietician can recommend an alternative formula that is appropriate for your child's needs.

If on the other hand, your child has symptoms of a food allergy, it is important to see your child’s physician for further testing. Possible food allergy symptoms can range from mild to severe, and include:

  • Nausea, vomiting
  • Diarrhoea
  • Blood in the stool
  • Rash, hives or itchy skin
  • Shortness of breath or wheezing
  • Swelling of the lips or eyelids
  • Anaphylaxis: a severe allergic reaction that is life threatening

Pay close attention to these signs of food allergy. In fact, food allergy is different than food intolerance and requires a stricter diet. Food allergy is an immunological response to one or more proteins in the diet. When a family member has a food allergy, the chances increase that your child may have an allergy. Common foods that cause allergies include cow's milk protein, peanuts, tree nuts, fish, shellfish, eggs, soy, and wheat. It is important for you to know that many tube feeding formulae contain milk or soy protein, or may be made in the same manufacturing facility as other products that contain allergens such as wheat or nuts. Check immediately with your healthcare professional if you suspect your child has symptoms of a food allergy following the ingestion of a formula.

Finally, just as any food, tube feeding formulae need to be carefully stored. Specific instructions are usually written on the label of the formula, but generally make sure to:

  • Store unopened formula in a clean, dry place at room temperature.
  • If only part of a can or container of formula is used, cover it with plastic wrap, label it with the date and time it was opened, and put it in the refrigerator.
  • Use it within 4 hours (at room temperature) and 24 hours of opening it, if refrigerated (If not used in 24 hours, throw it out).
  • To avoid an upset stomach, take formula out of the refrigerator 30 minutes before using and leave covered with plastic wrap.
  • Do not heat formula in a microwave or on a stovetop.

So far, and throughout all of the different sections of this website, we have covered together a wide range of information that can help you better understand your child’s journey with cerebral palsy.

Eventually, as you both become at ease during feeding, mealtime can provide pleasurable and precious moments between you and your child.

We believe that hearing the stories of how other families coped with CP can help you even more than you think.

→Click here to check out some real stories we have compiled from caregivers of CP children

 

References:

  1. Alexander D et al. Nutritional and health benefits of semi-elemental diets: A comprehensive summary of the literature. World J Gastrointest Pharmacol Ther. 2016;7(2):306-19.
  2. https://www.nestlehealthscience.us/mytubefeedingkid
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