Tube Feeding Experiences

All of our children are different of course, and their feeding needs are different from other children as well. There are many different tube feeding formulas available as well as many different ways to tube feed (bolus, pump, gravity drip, continuous, etc). All of the children will react differently to each thing as well. We’ve had a number of discussions recently regarding feeding, specifically about the formulas and the problems of medical supply companies. I am including excerpts from some of the letters just to let you see some of the things that have & haven’t worked for our children.

First of all, a couple of points to think about (These are my opinions only and are based on my experiences and those of people whom I know. All of these issues must be talked over with your child’s Dr or Dietician.):

1. Our children’s calorie needs are different than those of a typical child. Our children don’t move around nearly as much. So, when a dr or dietician is giving you recommended calorie intakes for your child make sure that it’s an appropriate amount for your child specifically, not what is recommended for a typical child of that age.

2. Pediasure is one of the most commonly used tube feeding formulas for children. Many of the children have had problems with getting congested that have cleared up AFTER going off of pediasure. We don’t know why. One possibility is that pediasure has a very large milk content that other formulas don’t have. The formula that has worked the best is called Compleat. It is the only formula that is food, not milk based. It does have some milk in it but is lactose free and seems to be tolerated better. This hasn’t worked for everyone. If one formula doesn’t work for your child there are many to try.

3. If your child is fed via gravity or bolus (fairly large amount at one time) and he/she tends to get ‘gurgly” after eating, ask your Dr about a feeding pump for him/her. Many of the children seem to do better with a pump, which delivers a set amount at a steady rate. Feeding pumps are expensive but I do believe Medicaid or most medical programs will pay for them. There are many different types available, all with pros & cons. It is a very individual thing as to which is best for your child. Several of the pumps are quite small and come with a backpack so that you can take your child out while being fed and no one will know.

4. Sometimes children do better if they have most of their feedings overnight slowly. This is working for quite a few children right now.

The following are excerpts from letters from parents who are on the Hydranencephaly mailing list.

Kristen age 18, “takes 3 cans of Jevity by pump, through the night. The cans are 8 oz with 250 calories in each. I give her extra water during the day with a syringe. About 50-60 cc at a time. She does much better with this slow feed. However, her bolus feeds used to be 4x per day and I was instructed that a bolus feed should never take less than 20 minutes. I don't remember questioning it at the time, but I think I figured that was about the length of an ordinary meal. Kristen weighs about 48-50 lbs and is about 47 inches long. Her growth has always been stunted. I was told that bone growth is stimulated by the pituitary, which stimulates that old hypothalamus that is damaged in so many of our kids. Kristen is short, and slim, but not underweight. Her dietician says she uses a chart for children with handicaps that prevent much movement. She had a dietician years ago that said "Well, she's 5 years so she needs "x" number of calories." It was always an astronomical amount. Personally, I think looking at your kid and thinking they are too fat or too thin tells a lot about how much food they need. That of course, doesn't work for those of you dealing with things like diabetes. I've been spared that problem. I think the difference in our kids is probably metabolic. I think Karin said something about muscle tone. I agree. Spastic kids seem to need more calories, and that makes sense to me. I had one little girl who was completely floppy with no voluntary movement. She had something like 100 mls 4 times per day and Boy! was she a little porker. She bordered on being too fat. Before the dietician saw her, she sat me down to find out why I wasn't' feeding her anything. Then she went in to see her and left scratching her head. She didn't change the amount. I think we are all like that though. Anyway, I'm not sure what the formula question was, but that's what we do here. If Kristen grows and doesn't gain weight, I increase her food. She has maintained the same weight and length for a few years now. She had a big growth spurt when she was about 12-14. Being 18 now, Idon't expect she'll grow a lot more.” Ann Farr

Ryan, age 11 “received 4- 24 oz. feedings each taking about 10 minutes to complete. All his feedings are bolus. We did exactly what his dr was telling us to do. Ryan never showed any signs of discomfort until a couple weeks before his diagnosis (hiatal hernia). I know there is a huge difference in the amount he was receiving and the amount he is receiving now. We have just decreased the quantity of the liquid and increased the number of feedings he gets. Ryan now gets a 12 oz. bolus feeding every 2-2 1/2 hrs (depending on the residual checks*) from the time he wakes up until we put him to bed, which is around 10-11 pm. If at anytime he misses more then 2 feedings I will put Ryan on his pump at night.

The horrific part is, Ryan's dr wanted him to have "MORE" in the 24 oz feeding, I told him at that time, Ryan just cannot have any more liquid in that stomach. This is one of the reasons they think the hiatal hernia developed. There was so much fluid it had no place to go, especially with the nissen in place. The only option was to push and expand the stomach. Like I said, none of this was intentional we were just doing what we were told. I am sure glad that the upper GI was done or we would have never of known. **Another learning experience**” Amy Keiser Magner

“Residual Checks”: This is something that can be done with most gtubes. You withdraw stomach contents via a syringe. This is done to remove air, see how much is left in the stomach from the previous feeding and/or to see if there’s anything abnormal about it’s appearance or smell. You then put what you’ve taken out back into the stomach. Not all children need you to do this but some do. Kayda only needed it during her last year, mostly due to too much air in her stomach. But, near the end the residual checks were how we knew food wasn’t moving through her system. Always check with your child’s Doctor; home care nurse or dietician to see if your child should have residual checks done.

Chris: “(almost) 12 takes 5 cans of formula a day...He is on 4 bolus feeds during the day and then an overnight feed...He weighs just 48 Lbs. Chris is tall.. About 4 and a half feet....Picture this, me: 5 foot, 105 lbs: carrying Chris...He doesn't make it easy when he gets all excited that I am holding him...The day will come when I can no longer do it...Scary thought... “April

Jason, age 10 “ would blow up like a balloon if fed him as much as everybody else. He only gets 3 8 oz cans of Pediasure and 8 oz water daily. He is 4 1/2 ft and 80 lbs. It’s hard enough handling him now. His doc wanted me to add an 8 oz can but I said no because Jason is essentially motionless.” Rose

Paul, age 7, “has four ounce feeds throughout the day. At night we do one can and one can of spring water at 60 per hour. So I think that is three and a half cans of

Nutren (a total at 1750 calories). Paul gets at least eight ounces of water a day between flushes and night feed. Plus he eats by mouth at least two four-ounce baby food jars a day. I think he is growing again though, he is bolus fed every four hours and I am hearing his tummy growling after three hours! Not sure what we will do about that, more formula means more weight!!! Danielle

My turn: Kayda had a somewhat interesting eating experience. She was one of the children that got gurgly on Pediasure. She was also one who was put onto the same amount of calories that a typical child her age would get and she ended up a real chubby gal. Putting her on Compleat took care of the congestion. To keep her weight under control she was on very few calories. 460 were the lowest amount. Because of so few calories she wasn’t getting enough nutrients so took a number of vitamins and supplements. At one time we added 1/3 jar of baby food lamb to make sure she was getting enough protein.

As mentioned in her story (p. 9), she got her feeding tube at the age of 18 months due to frequent problems with aspiration. When she came to us, she rarely swallowed, drooled a lot and was gurgly whenever sitting up. Once she started chewing on toys and other things, the gurgling cleared up and she started swallowing much better. As her health improved, I decided to try giving her something orally, just to see what happened. She ate it, liked it and didn’t choke or have any problems with it. I was very tense and worried about whether she’d aspirate but as she liked it I kept trying again. Over a period of a couple of months Kayda gradually took more and more food orally until she was getting all solids via mouth. When she first came to us, a swallowing study was recommended but we were turned down and it wasn’t felt to be “worth” it for Kayda. Once she was eating a fair amount I contacted her dietician to ask about quantities and when I should cut back on formula. She said, “I think she needs a swallowing study done”. “What a good idea!” I said.

By the time she had her swallowing/feeding assessment done, she’d been eating orally for over 3 months with no problems whatsoever. It was a 2-day assessment consisting of appointments with a Dr, Dietician, Nurse, and Speech and Occupational therapists. After the first day where 2 of the therapists on the feeding team observed Kayda eating a variety of textured food, they were convinced that Kayda was aspirating. The radiologist who did the swallowing study (video fluoroscopy) had done Kayda’s previous one 3 years earlier. At that time, all food either went into her lungs or up out her nose. So, that’s what he and the therapists expected to see this time too. Surprise! Surprise!!! To everyone’s amazement (except mine) Kayda wasn’t aspirating at all and nothing was going up her nose. Obviously that little gal had taught herself to swallow and control her food. The study did show that she was at risk of aspirating as she had a very delayed swallow and food tended to pool right near her esophagus. The conclusion of the study was that although there was a major risk of aspirating, since Kayda was enjoying eating it should continue but only with very well trained caregivers.

She ate orally on and off for nearly 3 years. We had to go back to tube feeds every time she was ill or just didn’t want to eat. She continued to get all her liquids via tube. At one point it was getting harder and harder to get her to eat. She just wasn’t interested in it any more. During her oral eating years we’d switched from Compleat formula for her back up to Ensure High Protein. But, as she got more accustomed to regular food she just couldn’t tolerate the richness of the Ensure and would gag and retch with it. So, I started tube feeding her regular food via a syringe. I would push the food in gently and it took about the same amount of time as if I was feeding her orally. After some major experimentation I discovered that it was possible to feed her by pump as long as I used a strainer to get all the food particles out first. This was good for Kayda, but it was very time consuming and also very hard to get all the nutrients into her with so little food. So, it was recommended that we go back to Compleat. This worked very well. The amounts and how quickly she was fed changed frequently over the years as her liquid and other needs changed.

Over her last year of life, she started having more trouble with food moving through her system and with discomfort due to gas. It was at that time that I started doing the residual checks. About 3 months before she died, she had another feeding assessment at the hospital where her previous one had been done. At that time we were querying whether she was aspirating and/or refluxing. The conclusion was that yes she was. We decided to not have the various tests done. They weren’t going to tell us anything significant. (At this time she was doing fairly well). She was switched to a formula called Peptamen. It was a partly digested formula and had the milk content really broken down so that it was easier to digest. By the way; it’s VERY expensive. This worked fairly well for Kayda.

Noah, age 2 ½: Noah wasn't diagnosed with hydran until he was 9 weeks old, so until then we just thought he was a 'normal' baby and he was breast fed. He fed day and night and we just assumed that it was a comfort thing for him, but later found out (after doing a test weigh before and after a feed) that he was actually not getting very much per feed, which is why he was feeding all the time. At around 4 months old Noah all of a sudden decided that he wasn't going to breast feed anymore, and he just seemed to be worn out. We persevered for a few days but were worried that he may become dehydrated so we put a NG tube in and also tried to teach him to feed from a bottle.

We didn't have very much luck and he totally gave up all oral feeds. We had the ng tube in for about 6 weeks and then decided that the best and easiest thing to do for everyone was to have a PEG tube put in. We loved the g tube straight away as it made things so much easier. We could now feed him even if he was sick, tired or asleep and we could give him meds throughout the day without worrying whether he was going to spit it out, or choke on them.

Noah was fed with a g tube with a regular baby formula until he was around 16 months, as well as a little bit of solids orally, but he didn't enjoy it enough to persevere and also he ended up with a chest infection from aspirating on the food so we decided to totally stop all oral feeds, to avoid any more infections.

After the PEG tube had been in for 12 months it was then changed to a BARD wizard button which is very similar to a MicKey button. We love the button but I have to admit that it took a little while to get used to after having the PEG tube for 12 months! Much to the amusement of other on the hydran group I came home with very little knowledge about how to use the button and panicked! I could not work out how to feed Noah without filling him with lots of air from the tube, as it wasn't always attached to his body like the PEG tube and therefore it wasn't always full of fluid. I quickly learnt (after lots of laughs and 'help' from the hydran group how to prime the tube first with water and then attach it! I am now a professional, but still people like to have a laugh about my experiences!

Noah changed from a regular baby formula to Resource at about 16 months old and just recently (aged 2 years 4 months) changed to Nutrini which is has more calories in it per ml than Resource.

We have had some trouble working out the best way to give Noah his feeds during the day. Noah has had a lot of trouble with reflux and because of this we have had to cut his feeds right down. He used to get 120 mls every 2 hours in a bolus feed (where you attach the tube to the button and just let gravity pull the feed into his tummy). This is a very fast and easy way to feed him. Since having a Nissen Fundo to stop him refluxing we can only give him about 100 mls per feed now, but because his new formula has extra calories he is still getting enough. We have used a pump overnight with him, but now we just give him bolus feeds throughout the day.

We have LOVED Noah being fed by a gtube since he was very young, as it has taken a lot of the pressure off us as well as him. He can now focus on other things - as he has a lot more energy as he doesn't have to use it all up on feeding all day. I feel it is such a blessing to have the tube as we can feed him no matter what - whether he is sick, tired or asleep and we know he is getting all that he needs including feeds as well as meds. Without the tube I know I would be hesitant to try new meds as it was so hard giving him meds before the tube as he would often choke and go blue, but now we don't have to worry. This has also been a blessing as new meds have helped him a lot with things from seizures, reflux and constipation.

One thing I do know for sure is that without the tube I don't think Noah would be as happy and healthy as he is today. Lisa

Other pages in this section
Feeding & Positioning
Tube Feeding
Oral Feeding Experiences
Reflux
Feeding Glossary

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August 16, 2001- January 12, 2005

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