23 answers

Weaning off Feeding Tube

Hello ladies! I have a 13 month old daughter who has been battling brain cancer for the past 7 months. When she first became ill in September (only 6 months old) she had a lot of tummy sensitivity and excessive vomiting so her docs placed a ND tube in her small intestine so she could feed without vomiting. After a 3 pound weight loss it was really the only option. By January we had graduated to a NG tube as she was now tolerating food in her belly without too much vomiting. She finished her treatments last month and is feeling much better now. But after so many months with not having to physically eat she has forgotten what being hungry means and has also lost her suck-swallow-breathe reflex. She refuses a bottle and a cup and does not like anything in her mouth except her pacifier and fingers. We would like to try and wean her off the feeding tube and get her actively eating again but it is proving to be difficult. I can get her to drink about 1/2 ounce from a syringe but after that she cries and clamps her mouth shut as soon as I get it near her mouth. She will eat a few bites of baby food but then refuses to eat anymore. If anybody has tackled this before I would be grateful to know what has worked for you and your little one.

What can I do next?

So What Happened?™

Hello again! It has been a while since I've been on here but good news on Audree's progress. First, she just had her second MRI and has been in remission for almost 4 months now. YEAH!! She is doing so well. We have our baby back again. She still has some developmental issues but she's getting to be almost like a normal baby again. Although with her illness and her sisters disabilities I'm not really sure what normal is anymore. Anyway, she still had the tube in after several failed attempts at weaning. One night, she pulled it out in her sleep and we tried again and something just seemed to click and she has had it out for 2 whole weeks now. She still has issues with drinking but she is eating plenty and we can get her to drink enough with a syringe to keep her from getting dehydrated while we work on increasing her tolerance of a cup. She LOVES ice cream!! I just wanted to thank everyone for their advice and thoughts and prayers. She's not out of the woods yet so please do not forget about her in your prayers. We would be grateful. Thank you all, N. and family

Featured Answers

Oh my, what has the Dr. said? Maybe there's still some soreness someplace. I wish I had an answer but can only wish you well and success in this matter.

Get in touch with The Oley Foundation. They are located
in the Albany Med Center in Albany. It is a fabulous
educational organization that helps people who are fed
intravenously or via a feeding tube. They could tell you how to go about it. Wonderful people run it. They havew
conferences all over the country. Good luck.

More Answers

I have no advice for this situation, but I just wanted to say that your daughter and all other little ones battling health issues are in my daily prayers.

You are a very special person because the Man upstairs knew your daughter would be in wonderful hands with you.

I will keep you and your precious daughter in my thoughts.

Humbly,
K.

Hi, Have you looked into your local early intervention program? I am an occupational therapist and we have an excellent speech therapist who works with feeding skills with several children who have feeding tubes. They should have someone that can help you.

God bless you and your family for all that you have gone through.

I had a friend a few years ago who's son had a feeding tube in his stomach. His was not due to cancer, but because of issues at birth. It took a very long time of constantly trying foods to get him to eat. They still had to give him formula through his feeding tube during this time since he wasn't eating much regular food. What she did was constantly offer him foods at every meal when everyone else ate. Even if it's just a large piece of pizza crust it's something that she can suck on to start getting the feel of food again. You might even offer her the less healthy things like jello and pudding. Dip her binky in things so she will get a taste of what is in front of her. It's going to be a long process getting her to eat again. Be patient. Those few bites she does take are a big step for her right now. Maybe each meal she will take just one more bite then the meal before, and eventually she will be eating fulltime again.

Wow! Congrats to your little girl! Yay!

Now, the only thing I can think of is: Make it tasty. Doesn't have to be super sweet, doesn't have to be spicy, just tasty. That being said, tasty for you might be a bit different. :)

Patience isn't just a virtue. I think it might not be much different than getting a 6 month old to like what you put in their mouth.

Also, socializing. Friends with children who are eating will help pave the way, too. SEeing other children enjoying food might do the trick a lot faster than sitting in a high chair coaxing her to try something new.

All else fails, maybe cookies might do the trick - or ice cream.

Stick with what you know and what works for basics, then try other things, too.

I wish you luck. Your daughter has done the hard work, this should be easy in comparison. :)

Mich

HI N.,

I'm sorry I don't have experience with this but I wanted to message you to let you know that our family sends yours healing thoughts and wishes for full recovery. It sounds like you are doing everything you can in this situation and my assumption is it will take time. You are such a brave mom. You are in our thoughts.

-L.

N.,
I don't have any advice but to ask the Dr's what they think. My main reason for responding to you was to tell you that your family will be in my prayers. I hope that your daughter will win the fight and be ok. God Bless you.

Hi N.,
I would just say to go slow with her. Be happy and excited for her two bites so she is encouraged. Maybe plan on feeding her frequently at first, instead of big meals. Her belly might need time to adjust and expand. Is it possible that the solid food is upsetting? Did her feeding tube keep her from experiencing what it is like to digest solid food? It may take a while to get her used to it, just try to be patient and happy for however much she eats and let her know that when she says done, it's done and that is okay. Don't let her see you worried about it. Also, I'd say to eat with her so she sees you doing it too, and views meal time as time with you. Maybe she can pick out a fork and spoon, get involved in the process? As a side note, I just want to say I hope she is healing and recovering from her brain cancer. I cannot imagine the emotional toll it's probably taken on your family and applaud you for your strength and courage. It definitely keeps my toddler issues in check, in terms of how serious they are.
My thoughts are with your family!

I'm sorry to hear about your daughter's struggles. I'm glad the treatment went well. My son has CHARGE syndrome and has had a permanant g-tube since 2 months old. He is now 19 months old and still 100% tube fed. For us, though it isn't safe for him to eat. There is a tube feeding group on Yahoo groups that is wonderful. You can join and then you can e-mail your question to the group and will get tons of helpful responses. There are so many people going through the same thing. The support is wonderful and the advice is even better. As a side note, there are several tube groups. I like Feeding_g-tubes and Tubefeedinggroup. Good luck! I hope this helps!!

Oh my, what has the Dr. said? Maybe there's still some soreness someplace. I wish I had an answer but can only wish you well and success in this matter.

Hi,
My partner recently had a brain tumor removed and so I know how difficult the process of everything can be. It was different for me because my partner is an adult not my child though. I have found great connections at carepage.com You can check out our friend's page on the carepages website, her page is titled missmattea. She is almost two and had a brain tumor that was discoverd at 9 weeks. This community at carepages is terrific. People support eac pother and are always willing to answer questions. I wish all the best for your family and your little girl.
-Tina

God Bless you and your family. Stay strong and be patient. If she is clamping her mouth shut, remember that she and her belly need to get used to eating chewing again, and she may begin to feel nausea and is expressing to you that she can only tolerate a little at a time. You may need to just feed her very little more often to start with small cut up finger food will allow her feed herself.Keeping track of the time and what you give her will ensure she is getting her nutritional value. All The Best.

N.-

I unfortunately don't have any advice on this, but by the sounds of it your astaying consistent and thats good. I can't imagine what your going through. I just wanted to express that your family is in my prayers and I hope that she continues her strong road to recovery.

A.

Get in touch with The Oley Foundation. They are located
in the Albany Med Center in Albany. It is a fabulous
educational organization that helps people who are fed
intravenously or via a feeding tube. They could tell you how to go about it. Wonderful people run it. They havew
conferences all over the country. Good luck.

Just wanted to say my heart goes out to you. I wish you the best of luck and can't imagine what you are going through. Take care and good luck with it all. A.

Hi N.
It sounds like you need to speak to your doctor about getting
some professional help with this. It isn't uncommon for a child who has been tube fed for a long period of time to not know and not want feed by mouth at all. Your daughter probably will need some occupational therapy and or help from a dietician. The sooner she starts the easier it will be for her to learn to
start eating on her own. I hope this helps.

I am sorry I have no advice, but I was so moved to have read of your latest struggle. I will keep you and your strong little girl in my thoughts! Best of luck and all of my best wishes!

I'm so sorry for what you and your baby girl are going through. Good luck to you. Sorry I can't help with the feeding tube issue.

Hi N.,
I don't have any experience with this kind of thing first hand and although I am a nurse, I have never worked in Pediatrics. She doesn't have any sores in her mouth from the therapy does she? I wanted to reach out to you to tell you how sorry I am to hear about what you are having to go through. I too am 29, but only have a one year old and can't imagine what you are feeling. I live in Plainview and am home with my baby full-time. If you EVER need help please don't hesitate to ask. Good Luck and God bless!!
E.

You should have a speech language pathologist that can follow your little girl and help her and your family with her feeding issues (because of her age she is eligible for early intervention/home services at no charge to your family). Please ask your doctor for a referral...

If you already have one and she/he isn't being very helpful ask for another one that specializes in pediatric feeding issues. Sometimes an occupational therapist is also trained in this area.

Good luck to you and your family.

We had to use the bottle that went with the pacifer. Our son use given a Soothie pacifer in the hospital to start the sucking reflux. He refused to eat from a bottle until I got a Soothie bootle. He was on a feeding tube but not for as long. It takes time but can happen. I have a girlfriend who has a five year old just starting with foods because they want the feeding tube removed (after over 4 1/2 years). Good Luck!!

N.,

First, I would like to say that your post really touched me because I cannot imagine one of my children having cancer, let alone a little baby. God Bless you and your precious little one. Although I have no experience with feeding tubes, my daughter refused to eat at around the same age as your daughter (she would only drink pediasure) and we went through the early intervention program to get her therapies to help, so that is my suggestion to you...have her evaluated by an early intervention program and let the experts help you teach her how to eat. For us it took speech therapy, but I know that OT's also do that sort of thing.

Let us know how it goes.

I haven't personally had this experience,

However, i want to suggest Nutella Chocolate spread, and Fluff marshmallow,

they are thick and harder to get off your tongue,
so she would have to keep moving her mouth,

when you feed her move your mouth and eat together,
so she sees that your doing it too.

If she eats baby foods good, give her this after she eats,

if she complains, try and rinse her mouth with water/juice mix,put it in a straw sippy cup and dab it on her tongue, do this every 20 minutes, and believe me she will get it,it comes back.

since she doesn't suck, and likes the pacifier, try a lollipop
and chocolate pops, and frozen fruits in the mesh bags
http://www.munchkin.com/products/detail.html?section=prod...

this will help increase her oral fixation.

and get re familiarized with diffrent textures.

ice pops are good too.

home made foods like stews that you put in the blender.
and try and give her a taste, ( just a tiny bit at a time,)

if you try and get her to eat every 20 minutes it will increase her appetite naturally, and increase her fluid intake, and help her keep it down, and build her up gradually.

You just have to slowly , steadily, increase the amounts,
its gonna take time, but i think that in a few months she will be doing much better.

M

Hi N., I read your story and as I have no experience with this I cannot offer suggestion(s) but I will pray for you and your family. There must be someone out there who can help you. I have raised 5, now have 3 grandchildren. Grandma Mary

Required Fields

Our records show that we already have a Mamapedia or Mamasource account created for you under the email address you entered.

Please enter your Mamapedia or Mamasource password to continue signing in.

Required Fields

, you’re almost done...

Since this is the first time you are logging in to Mamapedia with Facebook Connect, please provide the following information so you can participate in the Mamapedia community.

As a member, you’ll receive optional email newsletters and community updates sent to you from Mamapedia, and your email address will never be shared with third parties.

By clicking "Continue to Mamapedia", I agree to the Mamapedia Terms & Conditions and Privacy Policy.