My child will be receiving the ketogenic diet. Why do they need a tube?
The ketogenic diet is a very specific diet that can be used to help treat seizures. Your child’s health-care team, including a dietitian, will closely monitor your child while they are on this diet.
Your child will likely need a G tube prior to or during the ketogenic diet if:
- Your child has difficulty taking adequate amounts of liquid by mouth. Your child will need to take a set amount of fluid daily to prevent excessive ketone levels and prevent kidney stones.
- Your child depends on "thickener" for their fluid intake. Thickener contains carbohydrates which will cause a negative effect for your child’s seizure control during the ketogenic diet treatment.
- Your child has feeding issues, meaning your child cannot take in enough nutrients by mouth.
- Your child will need many supplements that are very difficult to take orally because they taste bad.
How can I prevent tube blockages while my child is on the ketogenic diet?
If your child receives their ketogenic formula through a G tube, they will need to have it replaced with a low-profile G tube as soon as the tract has healed, approximately two to three months after their tube is first inserted.
Because children receiving the ketogenic diet cannot take in any sugars, including those found in many liquid medications, all medications and supplements your child receives will need to be crushed from tablets. There is a higher chance of blockage in longer tubes with crushed tablets and formulas that are very thick. Having a shorter tube (low-profile) will help prevent the tube from blocking.
What if I want to give my child blenderized feeds?
Blenderized feeds are puréed "regular" table foods. You can give blenderized feeds through your child’s G tube if they are thoroughly blended. Some families give formula along with blenderized feeds.
To avoid tube blockage because of the thicker consistency, your child must have a G tube that is 12 FR size or larger. A dietitian must closely follow your child’s diet when starting the blenderized feeds to be sure you are giving all the calories and nutrition your child needs.
Your child cannot have blenderized feeds if they have a GJ tube.
Can my child eat by mouth if they have a feeding tube?
Right after the tube is inserted, your child cannot eat by mouth for a few days.
If a health-care professional has assessed your child and has considered it safe for them to feed by mouth, your child can return to eating by mouth as soon as the G tube feeds are maximized.
Include your child in mealtimes. For example, seat your child at the table during meals. Continue to introduce different textures and foods as they grow.
For children who cannot safely feed by mouth, provide oral stimulation and offer a soother during tube feeds. An occupational therapist will work with you to teach you how to provide oral stimulation.
Do I continue providing mouth care to my child?
Regardless of whether your child is eating by mouth, they still need routine mouth care. If your child has teeth, brush them at least twice a day. Your child may need toothpaste, depending on their age. Keep up with regular dental check-ups.
Use lip balm to help prevent dry, cracked lips.
Does having a feeding tube hurt my child?
The first few days after a tube is inserted can be painful but your health-care team will help ease your child’s pain with medicine and distraction. The nurses on the floor will be watching your child very closely for pain. The pain should decrease over time. Your child will feel comfortable by the time they go home. If the pain is not getting better or if it is worsening, contact your doctor or nurse practitioner to be sure there are no complications.
Once the insertion site is healed, your child should not feel any pain.
What kind of clothes should my child wear?
For babies, choose outfits that have fasteners (snaps, buttons, zippers) all the way down the front because they provide easier access to the tube for feeds and medications.
Onesies and tucking shirts into pants can help hide the tube and prevent it from being pulled out accidentally.
Be sure your child’s clothes do not rub too much against the stoma and are made of materials that do not shed. Fabric particles that get into the stoma can cause irritation and skin inflammation.
Can I travel with my child if they have a feeding tube?
Yes, you can. Your child’s feeding tube should not hold you back from travelling. You will need to be prepared with all the necessary supplies and equipment for the entire length of your trip. Bring along:
- extra feeding supplies such as bags, syringes and formula
- extra skin care supplies such as gauze, tape, scissors and barrier cream
- clean washcloths and the soap that you regularly use on your child’s skin
- extra balloon G tube and extension sets, if applicable
- emergency kit
Always have a backup feeding plan in case your child’s tube is accidentally pulled out and you cannot insert a new tube or emergency Foley catheter.
How can I include my other children in their sibling’s new routine?
Having a feeding tube inserted is a big transition for the entire family. Your other children may not understand why your child needs the tube and may become jealous of the extra attention your child is receiving.
Try to include siblings in the feeding routine and explain what you are doing and why it will help their sibling. Allow your children to ask questions. Make sure younger children do not pull the tube out or put anything into the tube.