Eosinophilic Esophagitis/ feeding tube

[ilovepooh]

Anyone familiar with either of these? Possible feeding tubes for night feedings...how does that work at Disney? Equipment needed?

 

[SueM in MN]

A little more information might help people answer your questions better.

Does the person already have a feeding tube or is this something new for them?
Will they be eating by mouth also, and the nightime feedings to get additional calories or is all intake by the feeding tube?

Interestingly, we are at WDW right now and the day before yesterday, I saw a little boy getting a feeding thru his feeding tube while the family was sitting on a bench in a shaded area at Epcot. In his case, he was obviously getting a bolus feeding (kind of large volume all at once) by gravity (you pour the liquid into a bag connected to the feeding tube and gravity makes it flow into the body). They needed very little equipment.

Some people are on slower tube feedings where the flow of the liquid is controlled by a feeding pump. These can be operated by battery, so you don't necessarily need to be plugged in.

If the person is just getting a feeding tube, the instruction about care they get with the feeding tube will answer a lot of questions. The care won't really be all that much different at WDW than it would be at home. They would just have to make sure that they bring what they need with them.

 

[don8life]

I'm guessing it is for your little one in the picture?

My daughter had booth EE and feeding tube one for a while after her liver transplant. Night time feeds are the best. This way when you want to go during the day just tape the hose that is left to the back of his/her shirt leaving enough room for head turning. Bring plenty of tegaderm and duaderm(tape holds tube on cheek). Sometimes her tube came out 3x a day sometimes she could go a week. I also found better tape att he pharmacy but for the life of me I can't remember what it is called.
The only ting you have to worry about in the beginning is sometimes the volume may b too much which will make the child vomit. So turn it down a little and work the way up to what the doc wants it at.
Before they oput it in you may get a class. We did it was very helpful.

You will need a pump and pole, tape, special scissors, syringes, tubes.
It was a Godsend as well as a nightmare.

SUE< I hope your having fun!! we'll be there in 3 DAYS!!

 

[ilovepooh]

Thank you so much! This is all new to me. DS was diagnosed with EE and now they're talking about a feeding tube at night. Then during the day we can feed him bottles and the few foods he's allowed to have right now.

Is there an alternative to night tube feedings? Is there an appetite enhancer that's safe for toddlers?

He's been off the weight chart for some time now(20pounds 18months), and we're scared to death to have a gtube surgically inserted into his stomach. The nose tube he will definitely pull out every chance he gets. He won't even wear a hat for 2 minutes.

Any other comments or advice would be appreciated! Thank you!

 

[SueM in MN]

Here are some links to recent threads that should be helpful to you:
Having a G tube inserted (note: the child in question had reflux, so his problem was different than your child and his problem would complicate the surgery).

Using a stroller as a wheelchair for feeding tube issues

Insurance paying for feeding tube formula.

Shipping feeding tube formula to WDW

G tube in Disney parks and cruise.

Feeding tube help

 

[MommytoMJM]

MJ has had a g-tube since she was 15 months old, since she cannot eat or drink anything by mouth it has been a lifesaver. We give her a pump feed all night long and water during the day. At home we bolus water a few times during the day, at WDW she has to be on her pump with water all day since her flow rate is so slow she doesn't get enough water otherwise. I'll answer any questions you have.

 

[twinmum]

We have a DS8 who has reflux (well, he had the surgery so should I say he had reflux?) and he has a g0tube, now used for night-time top-up feeds. He has a mic-key, or "button" now.

It sounds like the others have provided good advice and oyu now have a few resources to call upon. Feel free to add me to your list. Remember the nursing stations in the park, they'll be happy to help. We stayed at the GF and they were also very accommodating. I wanted to avoid bringing a portable IV pole from which to hang the feed and they went so far as to send pictures of the beds, measurements of the posts on the headboards, the whole deal - I was able to hang the feed from the top of the headboard.

Don't be afraid of a g-tube. It made such a huge difference to our son. He gained weight (slowly still) but most importantly, he gained stamina and able to progress muich faster with his physio (he has cerebral palsy). It was a big adjustment for us as parents, but after a little while, we felt totally confortable. We are so glad we decided to go ahead.

Wishing you all the best,
Twinmum

 

[disneyandme]

Is the Dr recommending a feeding tube only because of slow weight gain or is there more to it? My DD3 is only 26lbs now and it has been a slow go. We cheer for each ounce gained. She has many many food allergies so her diet is very limited. The Dr kept telling us we needed a feeding tube so she would get one the chart. She is now on the chart-- 3 percentile. One big problem for us was the feeding tube formula-- Neocate-- was the formula we used orally and she could only tolerate a certain limit, so giving it by tube would have only eliminated our use orally and no upped the intake.

 

[ilovepooh]

Thank you everyone for your support and advice. I really appreciate it!

disneyandme-DS has severe food allergies and needs biopsies of his GI tract to determine if he's flared up or not. (Eosinophilic disorder) The doctors want him to gain weight because he is only (20pounds 18months old) and off all the charts-including his head!

He needs the feeds at night, but I'm wondering if he'll eat less during the day because of it.

I think the tube allows us to increase his intake slowly over time overnight so he can tolerate the additional volume. He is supposed to still eat during the day, but I don't have to panic if he doesn't get enough.

I definitely don't want to eliminate feeding him orally. That will set us back. Hmmm?

 

[KadysMom]

My DD had a biopsy two weeks ago to test for EE. We were hoping that is what she had. The tests came back negative, even though she had the bumps on her esophagus, stomach and intestines... She has the same weight issues as your daughter. She was 18 pounds at 18 months. She is 5 1/2 and on 04-04-07 when she went for her endoscopy, she was 33 1/2 pounds. It is a constant struggle.

We were going to need the feeding tube if she did not gain a certain amount of weight, but we were able to hit that mark. She is on Prevacid twice a day, but, as far as appetite enhancers, my daughter takes periactin and it causes hunger. I can say that it works.

She started on this on 04-06-07, and she was 37 pounds this week. So that is 3 1/2 pounds in two weeks!!! We were so happy!

Please feel free to PM me with any questions.

 

[5 at disney]

My son has been g-tube fed for 8 years. We did day time and night time feedings. At the maximum he was fed all night and 6 times per day to increase his weight. It is imperative to get your son to a healthy weight before you start worrying about oral intake. All the doctors will just keep pushing the tube. Once your child is at a healthy weight, you need to work closely with a dietician and feeding specialist. They can really help get you on the right track and will help to reduce the feedings slowly and replace them with oral feedings. Your child's stomach will enlarge with the nightime feeds that may or may not make them more hungry. FYI..my son is now eating 100% orally and doctors are happy with his weight. Keep the faith!!

 

[ilovepooh]

My son has been g-tube fed for 8 years. We did day time and night time feedings. At the maximum he was fed all night and 6 times per day to increase his weight. It is imperative to get your son to a healthy weight before you start worrying about oral intake. All the doctors will just keep pushing the tube. Once your child is at a healthy weight, you need to work closely with a dietician and feeding specialist. They can really help get you on the right track and will help to reduce the feedings slowly and replace them with oral feedings. Your child's stomach will enlarge with the nightime feeds that may or may not make them more hungry. FYI..my son is now eating 100% orally and doctors are happy with his weight. Keep the faith!!

5 at disney-Thank you! That's music to my ears. (I've got 2 relatives who think I'm not doing the right thing- "He's just small.") Thank you for laying out a plan of action that's proven to work. I appreciate it.

Kadysmom-I'm glad you were able to avoid the tube.