Want to Know Your Experiences with an NG Tube for a Toddler

Hi,
My friend has started blogging about her experience with kids with reflux. Her first had to have a feeding tube. Take a look at: http://2kidswithreflux.blogspot.com/
Good luck,
S.

Dear H.,

There is a web site for kids with allergies dairy, gluten, egg, nuts, etc. it has all different recepies. It is also a magazine. it is called livingwithout.com
I love the articles when I pickup the magazine but I use the website more often, plus it is clutter free!

Hope that helps some! Good luck!

Hi H.,
One of my 3 year old daughters has had the possibility of an NG tube hanging over her head since she was born. My husband and I decided to do everything possible to avoid it and only do it as a last resort. She is 3 yrs 3 months old and weighs 24 lbs. Not sure who your Peds GI doctor is but we see Dr. Yinka Davies with Sutter. You mentioned that you are doing a high calorie diet and formula so you may be using the same items we are. We are still doing two bottles at night of Kid Essentials 1.5 which has 355 calories per 8 ounces. We also use Resource Breeze juice during the day which is 250 calories per 8 ounces. We put Duocal in her water and other foods.

We also give her extra zinc which helps the taste buds. We found with our daughter that she likes more favorful foods like salsa mixed in hamburger meat and cajun sausage. We also have her on VSL#3 which is a probiotic. The probiotic helps the digestive track and the immune system. We found with our daughter that when she got a cold, she wouldn't eat and she would reflux her formula. We also gave her Periactin (Cyproheptad) which is an appetite stimulant for almost two years.

My last comment is that if you have to do the NG tube, do it sooner rather than later. It will become more traumatic for her the older she gets. Good luck!

Boy, we have been there with my now 6 year old DD who was an early gestation preemie. I was really against having an NG tube placed for many reasons and we did everything possible to prevent placement. Today at 6 she is still pretty small (38lbs), but developmentally and cognitively on-target. Please feel free to e-mail me if you want more details.

H.,
I just wanted to let you know that our baby did not gain one ounce for 5 months. The doctors didn't know what to do other than a feeding tube and a toxic cocktail of hydrogenated oil and sugar water. That didn't sound like a healthy solution to me. I spoke with our therapists and they told me that once a child has a feeding tube, in their experiences, they've never seen them come out. They said there is no plan in place to remove them and the child becomes adverse to eating and on goes the self fulfilling prophecy.
I finally figured out a solution on my own, went to the health food store and spent $20 - that has last over 2 months and solved the problem within 24 hours. I also took him to a special therapist for 3 visits and that has helped even more. Within 4 weeks of starting our new regimen he gained 1 pound and has gained a pound a month since. It's been 4 months now. We have no ng tube or gastro tube. He is eating better than ever and gaining beautifully.
By the way, an ng tube is the nasal tube that has to be replaced about once a week and that's no fun, let me tell you. Our baby has had to have one several times due to surgeries. Most likely you won't have that long. They'll go straight to the tube in her belly button and that is the one that our therapists have never seen reversed.
I'd love to talk with you and help brainstorm to see if what we've done could help your sweet girl. We've been able to solve this with other kids too. I'm on a mission to save our babies from torture. :)
Blessings,
C.
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Hi H.:
Wow! Celiac disease is one of the main types which causes low weight gain. I sure hope your drs are addressing that issue first and foremost. If not, get them to. How much does she weigh? My son has VATER Syndrome, Failure to thrive, GERD and a few other items but is 2 1/2 yrs old and only weighs 20lbs. He has a Gtube in his stomach which currently I do not use since he would rather eat via mouth but the GI dr always wants to go back to the tube. Whatever! He is happier and staying away from the hospital by not using it so.... as his mom I made the choice to go against dr. wishes.
An NG tube in a 2 yr old is a VERY BIG DEAL! She knows what it is, and will probably not like the feel of it down her throat when she comes out of the anesthesia if they even use that. My little one they would just hold him down as he screamed and thrust it down. That sent me into a world of agony. I do not honestly believe an NG tube is the best way at that age. If she really is so below weight, talk about the Gtube directly in the stomach. My guy ended up numerous times pulling the tape from the side of his face and pulling the NG right out until they finally listened to me and put in the GTube. Who is your GI dr if you don't mind me asking? When is your appt?
I guess the good thing it sounds like is that she is not afraid of needles. It is always hard to say what any child will do but you know her the best even more than the drs. Think about it and talk with your significant other and family. If she is not much less than 20lbs as my guy is, ask for another route unless you are used to tube feedings, etc.
I'll pull some of my information from my PAGER group website and send you info on celiac disease and reflux and feeding issues.
Would you mind? If not, give me your email and I'll get it over to you.
T.
P.S. Good luck and stay strong (you know what is right to do)

I have 3 kiddos, 14, 7 and 6. My 6 yr old weighs 37 lbs. She doesn't have celiac, but she has a different disorder when she doesn't feel hunger most of the time and what she eats, her body doesn't absorb well. When she was about 19 months, we had to make the difficult decision of NG tube or Mic-Key button g-tube. We chose g-tube for her as she as well does not like stuff stuck to her and we envisioned her trying to rip the tube off her face all the time. For the first year after the gtube, we kept her in onesies so she wouldn't mess with it and by now it's just her "button". She is in first grade and we try to encourage her to eat at home and at school, but every night we just hook her up to a feeding pump in her room and as she sleeps, she gets about 700 calories overnight. The g-tube route has worked well for us because of where it is, she can go out and it's not an obvious thing. I don't know if a g-tube is an option for your daughter, but it's been a great experience for us.

You might look into raw unpasturized whole fat milk www.organicpastures.com it still has all the beneficial bacteria in it and actually has a lower bacteria count than pasterized milk. My daughter is doing very well on it although she does not have the same issues your daughter does. The immunoglobulins in raw milk may help her GI issues. Another option would be colostrum which can help with colitis and might help.

Give her avocado, lots of it! And full fat smoothies, Brown Cow makes a yogurt that's full fat (cream at the top.) If she isn't that fond of avocado, you can throw IT in the smoothie! Coconut milk, instead of cow's milk can go in there too, or even better coconut cream, which you can get at a Whole Foods or Good Earth in Fairfax. Just some ideas. Good luck!

I don't have a toddler - my daughter is only 6 months old, but she had a heart transplant and has had an NG tube in for the past month and a half. She has pulled it out twice - so taping it down well and keeping it taped (to the cheek) is very important! But, she HATES a lot of the medical stuff - even getting her temp taken - she's had so much done to her...but, the NG tube really didn't bother her. She just liked to hold on to it and she would pull on it, so that is why it came out. We had to learn how to put it back in and that part was awful - for us...for her, it wasn't really that bad.
It definitely helped with her weight gain (she was slow to gain weight after the transplant) - we pumped food at night so she got the maximum amount and she is now gaining weight without the pump, so the tube is coming out.
I'm sure you will find a good way of dealing with it. Its hard when your child is the only one with one - we are living at the Ronald McDonald house and there are a ton of kids here with them, so it seems somewhat normal. All the toddlers seem to do pretty well with them.
The nurses were really good about cutting the tape in the shape of a heart or something to make it look "cuter"...so, there is that to make her feel better.
Good luck - hope it all goes okay.
--S.

Hello H.,

You may try adding probiotics & enzymes to her diet - they will greatly help with the friendly flora in her intestines and help her get more nutrients from the food she's eating (thus helping her to possibly gain weight and help with the dark circles under her eyes). If you wish more information, feel free to contact me.

Blessings,

B. C., Natural Health Coach
Certified Applied Aromatherapy Instructor
Herb Specialist
Certified Reflexologist

Greetings H.: I just want you to know that you are right up there with HERO status!!
I have 5 children one has several disabilities but I have no experiance with this ; but you are amazing!! I know that you must be weary much of the time have so much going on just to keep eveyine a bit organized. I hopethat you have a good support system and cheerling squad that encourages you when times get tough.
Your little ones are very brave and I will keep your busy family in my prayers. I will ask friends to see if they have experiances with this. God Bless, Nana G