Re: /all-Kids who have no or little oral feeding-?'s

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We vent as soon as she starts to struggle too as I can't bear to see her turn red and retch. But the problem with that is the docs are worried that she may lose too much sodium that way. Zipporrah can actually feed at a good rate now (100 ml/hr-daytime with 6 oz given then three hour breaks in between each feeding plus 60 ml/day-over night) but has problems when she gets too much phlegm build-up or coughs. I would try to re-feed her the burp tube contents, but it is mostly all phlegm so think it unwise! She tends to gag very easily as well. She just began oral motor stimulation with a SP/OT therapist last week and previously had been working with an Occupational Therapist since about 4 months of age. The OT worked on mostly nursing and gaining calming techniques (which she REALLY struggles with) but was so against a g-tube. The docs and I KNEW she needed one but this OT was content with her being dehydrated all the time and had absolutely NO experience with NG-tubes or G-tubes. I think that is ridiculous for a FEEDING SPECIALIST to NOT know these feeding techniques! Needless to say the therapy sessions were more me teaching her rather than vise-versa so we discontinued using her and went with Asenath's speech/OT Therapist, who we adore. It is done in my home, unlike the other, which is an added benefit. Zipporrah can only handle short periods of oral stimulation at this point. Touching her face or mouth are VERY hard for her. She shows her agitation by kicking her left leg and diving her head into my lap while complaining. Amy has been good to take it slow thus far. I am hopeful that we will be able to regain so motor control and begin to feed her orally at some point, but don't expect all to return to normal as the docs told me they thought it unlikely. They said eating is a learned behavior though and the only way to learn is to work consistently and cautiously with a therapist. We have not had a follow-up ph probe (or a pre-one even-never done one although have seen some done on other peoples' kids) and I spoke to our surgeon's assistant yesterday and she thought it unnecessary unless she actually began to vomit. She said that after a couple months with the g-tube kids usually can begin to burp again due to the swelling going down inside the stomach. She said it is part of the healing process. I will discuss all of the issues next week with the GI doc to see what she thinks but am hopeful things are ok just a harder weak than normal due to a viral infection. I have to agree with you on the removal of the tube. If she needs meds, she will appreciate NOT having to take them orally, unless there are only a few. But I can understand the desire to look "normal" and not have an attachment on the tummy in not needed. Thanks for all your help. Darla: mommy to Asenath, Zipporrah, Luke, and the other 6 kiddos Re: Kids who have no or little oral feeding-?'s Darla,Our is 6 and had a Nissen at two because of continued GERD. She has also had problems with dysphagia. I discovered how to handle things rather slowly but now have it mostly down to a science. At the first sign of any gagging or even a look on 's face that there may be a gagging episode we vent. The first year after a fundoplication this is essential. Ours (and probably most of them) loosened up over time. It takes the body quite a while to get used to this.Our still gags more than the typical kid. She also still refluxes. She has never been off GERD meds. Have you had a post-Nissen pH probe? still takes Nexium. To reduce gagging, we fed VERY slowly. By the time she had her Nissen, she had stopped nursing and really ate very little. She weighed only about 16 pounds (at two). We fed her with her g-tube. She got the g-tube at 15 mo. We pumped her at night very, very slowly (15-30 mL/h). When we did bolus feeds, we gave her only about 15 to 30 mL. We had to give her about 15 mL at a time and then wait 5 to 10 min before giving her the rest of the feed. It was very time consuming and difficult. If she started burping things up, we vented her, collected the stuff and then slowly put it back in after about five minutes. OK, it sounds gross to put vomit back in but that is what stomach contents are like. If we had not done that, she would have had bigger problems.It took a long time to be able to eat. She is six and just within the last year started eating orally. She eats enough now to maintain her own weight. Our dilemma now is do we remove the g-tube or not. She and my hubby would like it out. I wonder about the wisdom of that. If she has mito (and what else fits, especially with her brother's testing indicating mito?), her future points to much more medicine than she currently uses. learned within the last two months how to eat a chicken nugget. She can also eat bologna and hot dogs. She can eat shredded meat. This is a vast improvement from where she was last year. I now have hope that she will eventually be able to eat meat in the future. But at 6 years old, she eats much more like an 18 month old to a 2 year old.I would suggest a pH probe if one has not been done recently. I would also suggest a swallow study if one has not been done recently. Gagging and retching can loosen the stitches in a Nissen. Refluxing can cause esophageal damage even post-Nissen.

[Guest guest]

Darla,

I am shocked that they did a Nissen without a pH probe to prove that there

really was GERD causing the problem. Our vomited regularlly. The GI

even saw it. Even so, we had several pH probes to prove that GERD existed.

Our had mostly mucus when she started gagging. We refed it. That way

we did not have to worry about electrolytes. You could always add water to

the mucus to make the bubbles go down and then refeed it. If you don't keep

the tube open, it is going to hurt.

Our feeding therapist is a speech pathologist/therapist. Since speech

pathologists have an MS and they specialize in facial structures, it seems to

me that they would be best to use as feeding therapists. We have not had the

greatest luck with OTs in general.

Our has GERD even post Nissen. She refluxes at times associated with

feeding. It still happens. We are using meds now and she will NEVER be off

of them. If your daughter is still having problems, I would ask that they

restart

the meds and see if that helps.

takes plenty of meds right now. I hate to remove her g-tube if she faces

life with tons more meds.