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Oral Feeding Experiences

The previous discussions have centered on children who are tube fed. However many of our children do eat orally. Here are a couple of examples of their experiences

Rachel, age 7: she feeds orally well blended food at various times during the day and drinks from a cup like a normal person. It was hard in the earlier years with sucking problems and while she was teething: but a lot of patience and encouragement helped her along. She takes in her food an extra calorie supplement called duocal and also has Gaviscon in her food to give relief from trapped wind.  Agnes Marshall

Brendan, age 2 1/2 eats orally baby food mixed with cereal so itís kind of thick. Also mashed potatoes, cream of wheat, grits, etc. He seems to prefer veggies over sweets because he makes ugly faces for the sweet stuff. He is also on 2% milk now. They gave him whole milk in the hospital and of course he had no reaction. So the dr. thought we were nuts but at least know he can have anything. And he really loves ice cream.  Katrina (Brendan also has a gtube)

Nikki age 2 is fed mostly by G-tube because she burns more calories eating than she eats. She does eat soft foods (mostly 1st and 2nd stage baby foods and cereals) by a rubber tipped spoon.  When she eats by mouth, no matter how sweet or plain flavored it is, she will make faces like we are trying to poison her! It is really funny at times. Nikki will also take a bottle with Pediasure in it BUT it is really slow going and she will only take about an ounce before she tires out. Her favorite foods are pears, rice cereal, ham, beef, spinach, apricots and scrambled/mashed eggs. We have been known to feed her mashed potatoes and gravy (you know us farmers!!) and cakes and crushed cookies and crackers. Today she had a blueberry muffin while we were at convention, she seemed to like it. We are also trying out the cup. We are unable to use the leak free valve; she has to work too hard to drink from it with the valve in place. We had also tried out the rubber spout that fits onto the bottle and that works well until she starts to bite it, and then we have a mess!! We use the new Playtex vented bottle and she never has a bubble after eating. Nikki still takes a pacifier and we are trying to break her from it, we mostly use it for comfort. It is just a Nuk #3. We were giving her juices but they just filled her us and then she would not have room in her tummy for her formula. We have tried many formulas, Similac, Good Start, Enfamil, Peptamen and now Pediasure. We are qualified for WIC, but they tend to squawk about the cost of the formula. We also do not use much water other than a very small flush, because again it fills her up! Her G-tube was a real debate for my husband, Rich and I.  We deliberated for about 3 months but it is the best thing that we have ever done!! The GI doc didn't think that Nikki would need a fundoplication, because her upper GI didn't show reflux but after the G-tube surgery, she started to reflux and had to have the fundoplication last May, about 6 months after the G-tube placement. Lynnette

As you can see, some children who have gtubes can continue to eat orally as well.

Kemmer, age 7: As you can tell from Kemmer's year old picture, he loved to nurse. He had no sucking or swallowing problems. He stopped nursing at 8 1/2 months and took a bottle with formula until about 1 1/2 years. He has eaten food since then and has gradually increased the texture of the foods. He now eats solid (raw baby carrots and starbursts candies) foods. I give him the starbursts because they are very chewy and cause a lot of saliva to help with swallowing. I believe that he needs to maintain and strengthen his swallowing and chewing. I also got him the sonicare toothbrush to help with the gag reflex and sensitivity in his mouth. He is a very good eater. The only things he can't eat very well are really doughy things like pizza dough. I think it's just too hard to swallow. I am fortunate because Kemmer really likes to chew. I would give him gum if he wouldn't swallow it. He eats two times a day; usually oatmeal (one full bowl) or fruit for breakfast. He will drink water throughout the day, with about a full glass about 4 hours after breakfast, because of the delayed emptying thing. Then he will have dinner, it's usually whatever I feel like making.... p.b. sandwiches, steamed vegies, BAKED SWEET POTATOES (his fav) ZUCCHINI (his other fav), stir fried vegies and rice. I don't give him meat. It is too hard for him to chew thoroughly, and I don't feel he needs to eat meat. He also only drinks water. He just doesn't like the taste of anything else. I don't mind, water is the healthiest. Meshel and Kemmer

One more personal note: Care of Gtube site: See page 156 for general instructions on relieving redness around tube. Each family has worked out what is best for their childís tube site. General instructions say to leave the site open to the air with no creams or dressing. That didnít work for Kayda. Every single time I was told by a professional to leave it open, Iíd try it for a day or two and her site would always get red again. So, what worked for her was:

        Her site was cleaned with water only twice a day

        I then put an antifungal cream* around tube

        Then a cream called Sulcrafate (a liquid ulcer med, which is mentioned in the section on GERD) mixed with Desitin ointment. This worked as both a barrier cream to protect the skin around the tube and it also helped seal the skin around the tube to prevent leaks.

        Then I covered her skin with a soft gauze pad that had a Y cut out so it fit.

*If your child is on any steroids either to prevent or treat asthma and they have persistent redness around the tube, ask the Dr to check for yeast growth. This should also be checked if the child has been on antibiotics. I found that applying the antifungal cream twice a day prevented infections from returning.

One more note, if you put gauze or any type of dressing around the tube site it MUST be kept absolutely dry. Moisture will only cause infections or irritation. Check the dressing several times a day. If your childís tube leaks when you unplug the feeding tube from it, protect the skin with a cloth.

Remember: always check with your childís Dr or person advising you on gtube care before trying any new strategies.

Further note 2005: My son who doesnít have hydranencephaly had problems with almost constant gtube site infections. I was told to try putting eucalyptus oil around the site twice a day. It worked amazingly well. I put 1 drop of eucalyptus oil/10 cc water and then apply the mixture with a qtip twice a day. After starting this the only time he had an infection is when he was at respite and the caregivers didnít follow instructions.

Other pages in this section
Feeding & Positioning
Tube Feeding
Tube Feeding Experiences
Feeding tips and tricks
Reflux
Feeding Glossary

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August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

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