Feeding update

It's been over a month since we've tried easing Peanut's GI problems by changing around her formula mixture. Because of her metabolic disorder, she has to be on a low-fat, high-protein diet. It's hard to make when she doesn't take anything by mouth, everything through the tube has to be measured exactly right.

We stopped her BeneProtein, and her Polycose, leaving her on just Neocate Infant. She was better GI-wise than she had been in ages! She started sleeping so much better through the night, and although she was still retching and gagging, she wasn't actually vomitting. The dietician had me slowly add the Polycose back in, because she needs those calories. She did fine for two weeks, still no vomitting and still sleeping better.

Then the dietician asked me to add back in the Beneprotein, so we could be SURE it was that. It is a whey protein, which is a dairy product. We added it for two nights to her mixture, and we had two hellish nights. She was up screaming and writhing around in her crib. She was retching and gagging and ... throwing up. So I stopped the Beneprotein last night.

At least we KNOW what the problem causer is now! The dietician is now trying to find a protein supplement that is dairy free.

I had this thought this weekend, that perhaps I should research blended diets. Wouldn't it make more sense to get a recipe that would include all the calories, fats, proteins, vitamins, etc .. .that Peanut needs? Then I could blend it up real good and put it through her feeding pump that way.

I am a bit scared to ask the dietician about it, afraid to sound like a wackjob. LOL I think I will ask her when she calls me back. The worst she could say is "No, I don't recommend it".

Do any of you use a blended diet for your tube-fed kids, instead of formula??

Feeding Is a Nightmare

My Peanut has been fed through her g-tube since she was 10 months old. Prior to that she drank from bottles, but not well. She never took more than 10 ounces a day. Yes, a DAY. And what she did take was in half ounce increments, and it would take 45 minutes to get that much in her. She had low muscle tone in her mouth, and would dribble all over. It was not fun. Then at 10 months she got parainfluenza, ended up on an ng-tube, waiting to recover so she could have a fundoplication and g-tube placement. She was tiny, about 12 pounds. She got her g-tube when she was over the parainfluenza, and she has never eaten by mouth again.

She *CAN* eat by mouth. She can open her lips, she can chew, and she swallows normally. But she will not do it. She is so orally aversive that we are considered feeding therapy drop-outs. She simply can not be fed by mouth. Reflux is a HORRID thing!

Due to her metabolic disorder, she cannot go more than 3-4 hours without fluids. During the morning and day time she gets Pedialyte every 3 hours. Then she is hooked up to her feeding pump (Zevex Infinity for those in the know) from 3:30pm-7:00am. It is such an inconvenience. The reason she is hooked up for SO long is that she has never tolerated more than 50 cc's an hour. That is sloooooow for pump feeding. To give you an idea of how much it is, 60 cc's is 2 ounces. She tolerates less than 2 ounces an hour, by a slow drip. When she wakes up in the morning, she always chokes and gags and retches until she throws up. Then she always throws up her morning Pedialyte.

The GI had this thought that perhaps it was the Beneprotein that was making her throw up. He said that many patients don't tolerate it. My Peanut has always been a retchy girl, but this is worse than ever before. Her formula is a mixture of Neocate Infant, Beneprotein, and Polycose. So we are doing a trial right now. We are ONLY giving her Neocate Infant. She stopped throwing up! We tried it for 5 days, with NO throwing up. She still retches and gags, but no actual vomit. So I added back in the Beneprotein to see what would happen .. and the next morning, she threw up. I took it back out, no more vomit.

AH HA! An answer perhaps! Even better, is that on just Neocate Infant I have been able to get her feedings up to 65 cc's an hour so far. For every cc that I can increase her, it lowers the time she has to be hooked up. It is much easier in the afternoon when she's awake to NOT have her connected.

So that's where we are. I don't think she can stay on just Neocate Infant forever, because we have to lower the volume of formula per water due to her metabolic disorder. She is not getting the full fat of the formula, so we need to add in supplements. I am waiting to hear from the metabolic dietician to see what to do next. In the meantime, we haven't had puke in almost two weeks!!