These are feeding options and ideas for both before and after a feeding tube is As things progress it begins to get harder and harder to get food down, one thing I found that worked great was mixing food with the liquids, send emails to gina@hideandseek.org for more information or questions.
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These are options that families have used in their children with Sandhoff, but by no means do we say that you have to use these options, this is simply a compiled page of suggestions and ideas that may help to offer you some advise on what to feed or how to feed your child. Feedings should be discussed with your primary care physician and should be tailored to meet your child's current needs.
Feeding Ideas for Children not yet on feeding tubes:
Soy baby formula should be used instead of "milk" products. The reasoning behind this / we found that the soy milk is a lot easier for children to digest and does not cause as much gas or air in the belly. Milk or milk formula is extremely hard for these children to digest / it takes energy to digest things and to use energy on digesting is not always were the need the energy to be used. They need that energy to fight colds, illnesses, and to maintain their physical strength.
Use a lot of baby fruits and vegetables for feedings!!! Remember fruits that start with a "P" help in the pooping department, this included not only Prunes but Peaches, Pears, Plums, and Pineapple.
Vegetables are good for raising the bodies natural enzymes. Some are easier to digest then others, Sweet Potatoes were one of our favorites! Carrots are good but not very tasty! Try the blander ones like corn, squash, or potatoes.
Juice should be given, but avoid the none 100% juices. Nectars are wonderful. They taste great and are full of calories.
Meats can be given and are a great source of protein, I would avoid beef though, Chicken and Turkey were our favorites!
1500 calories a day should be a focus for kids not yet on feeding tubes.
ie::: You can add a jar or two of meat to soy milk and feed it all together in a bottle or you can add a jar of baby fruit or veggies to juice. The best way I found to get a good mix was to blend it in the blender, on liquefy.I found that the soft tip sippy cups worked great also for feeding mixtures of food and liquids.
As coughing and choking begin to be a problem, you can add a product called Thick It, this can be purchased at most pharmacies. Add the Thick It to just about anything to get a thicker feeding. Thicker is easier for them to swallow. I recommend a barium swallow study to be done though, if coughing is present every feeding. This study will show whether the child is aspirating (food or liquids entering the lungs), and it will tell you whether it is safe to continue to feed them by mouth and whether they are able to clear their lungs if they do aspirate. It is very dangerous to continue feeding by mouth if the child is aspirating, because they can develop aspiration pneumonia.
When the time comes that a feeding tube has to be placed, there are 2 general options.
1. A "G Tube"
This is placed into the stomach surgically, with a "button" type opening. This is more of a permanent option. Feeding will be fed by machine directly into the stomach. The healthier the child is the better before getting this surgery done.
Generally the hospital stay is 2-3 days.
2. The "NG tube" this is a soft spaghetti looking small tube that is placed down the nose and into the stomach. No surgery is required for placement of this tube. A hospice nurse placed ours. The tube is changed once a month, and you can do it yourself at home. They say not to use this for more then 6 months however we had this for over a year and did wonderful with it. Feeding are done again by machine through tubing that hooks to the Ng tube.
One thing that I have found so frustrating is that most Dr's say that once a tube is placed - your only option of food is Pediasure. This is absolutely Not True. First of all let me say that in my opinion Pediasure is not a good source of nutrition nor does it replace the meals that the child was having before the tube was placed. Pediasure is full of sugar, sugar turns into fat - not good!!!!
There are vitamins in Pediasure but a multiple vitamin supplement is much better. I was told when I got the Ng tube / well he should have 3-5 cans a day! I said and what else, he said Nothing else, he will only have that from now on, I said No Way!!!! My child is not living off that!!!! I then had to become very creative!!! Me and the blender became the best of friends!!!
I based the daily feeding on 1000 calories a day. I used a product called Polycose (available at any pharmacy over the counter) which is a calorie additive, if the daily amount of calories was not sufficient. Also you should drop down to stage 1 or 2 for the baby food.
For breakfast heres an example of what we used 8 ounces soy milk / a jar of bananas / and some rice cereal (3 tblsp)
For Lunch: 8-10 ounces of juice or nectar / jar of veggies and fruit / and Polycose. The polycose has 200 calories per 1/2 cup of powder.
For Dinner: 8-10 ounces of soy milk / 2 jars baby meat.
Any of these things can be changed around, put your thinking cap on and get truly creative.
All if these things should go into the blender and be blended for quite awhile. Be careful not to use any foods that contain seeds or chunks, or even strings, ie no berry foods, nothing that contain anything that would clog the feeding tube. You will have a big problem then!!! Trust me did it quite a few times myself. Use things that are smooth, bananas, peaches, pears, plums, prunes, etc. Veggies that are good are sweet potatoes, squash, or stage 1 green beans.
Once you have blended the food / please make sure u strain it atleast twice!!!
Then you add it to the feeding bag and feed through the machine.
When things progress even further into the disease / feedings may have to be slowed down, use your judgement in what is best for your child. I never had to come to the point that we had to slow feedings, but from listening to others one thing that was common was to use pedialite for hydration and slow the feedings way down. Most children come to a point in the last stages in the disease that they can no longer tolerate any feedings, they will no longer be able to digest anything and will vomit the feeding back up. This is a normal process of the bodies way to tell you that it is preparing to shut down.
Hydration only should be used at this point. Feedings to be given at an extremely slow rate of 15-30 cc an hour or less. Which is 1/2 to one ounce of liquid and hour.
Please know that I am available at anytime to answer questions or concerns you may have about feedings or nutrition - or anything else you may want to know / or need help with.
From one parent to another I understand the millions of questions that come with this devastating disease, and I am happy to help anyone in anyway they need it!!!