April 26, 2008,
N.C. asks from Chemung, NY on April 21, 2008
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.
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
G.A. answers from New York on April 22, 2008
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.
P.K. answers from New York on April 22, 2008
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.
K.P. answers from New York on April 22, 2008
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.
V.H. answers from Jamestown on April 22, 2008
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.
K.M. answers from Syracuse on April 22, 2008
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.
M.B. answers from Rochester on April 22, 2008
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. :)
L.D. answers from San Francisco on April 22, 2008
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.
D.M. answers from New York on April 22, 2008
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.
R.L. answers from New York on April 22, 2008
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!
A.W. answers from Binghamton on April 22, 2008
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!!