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Jan 02, 2010
anj
Refusing to eat since having NG tube inserted
Eating only thru NG Tube
Our now 6-month old son had heart surgery at age 3-months (full tet repair). After the surgery he was put on NG feedings because he was too weak to eat on his own. This was supposed to be temporary (about a week or two) until his pain subsided and he was eating more normally, either from bottle or breast. However, it is now 3 months post-surgery and he still refuses to eat. His reflux is being controlled by Prilosec and he has been taken off of a med that was making him vomit (reglan). He keeps down all of his tube feeds (5oz a feeding) without any problem. He gets mad when we try to give him the bottle or the breat and actually looks at the hospital pole like he's waiting for his feed. He will, however, breastfeed about 1-2oz in the middle of the nite when he's half asleep. He was a super eater prior to his surgery....eating from both bottle and breast. He has had GI tests, feeding team evals and everyone is at a loss. We keep being told he'll eat when he's ready...however, my husband and I feel he's been conditioned to eat from the tube. Does anyone have any ideas on how to get him to suck, swallow again?
Jan 02, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
This is such a loaded question, I've been exactly where you are and know exactly how it feels. ((HUGS))

I might need to give you my number and have you give me a call or call you OK.

As far as tube feeds, we made zero progress with Jedd's oral aversion until we ditched the NG tube and got a G tube. With all the tape on the face and a tube down their throat, kids just don't WANT to eat with an NG tube in. I know only of ONE ng tube feeder who was successful at coming off of tube feeds and becoming 100% oral.

That doesn't sound bad but keep in mind I know hundreds of tube feeders on line. Chances are slim in getting completely oral with a tube in a child's nose. It's a distraction and makes eating completely uncomfortable.

Our local rehab/feeding center told us they would not see us on a regular basis for feeding issues until we yanked the NG and got a G tube placed.

Where in the US are you located?? I can tell you where the best clinics are in your area and point you in the right direction.

Bottom line, if therapist are telling you that they are at a lose and they can't figure out what to do, you need to RUN somewhere else to get seen. That is NOT good to be told, they should not run out of ideas.

Jedd was the most complex kid seen in our city by early intervention (as far as eating issues went) and they did NOT run out of ideas. Our O.T. even went to therapy clinics out of state to learn MORE to help us MORE.

Jedd was a sneaky one and he pulled ALL the tricks out of the book to avoid eating. From, kicking and punching the bottle at around12-16 weeks old, to pretending to be asleep in the high chair to avoid eating. As soon as we would say, OK we are all done, he would pop up awake and want down and we would continue the feeding session. He quickly learned that falling asleep in the chair would not earn him a pass to NOT eat.

This all said, do you feel whole heartedly that his GERD is FULLY under control first of all. A child who has unresloved medical issues will not eat successfully orally.

Jan 03, 2010
anj
Refusing to eat since having NG tube inserted
Thank you so much for the input. And it is heartwarming and comforting to hear of your sons success...he is adorable! Our cardiologist mentioned that the next step the feeding team would suggest would be a G-tube. We kinda flipped out when he said that because our son has no oral aversions....he puts EVERYTHING in his mouth. When we brought him home one month post surgery he was eating about 1 oz from the breast prior to each tube feeding. This slowly dwindled away down to nothing - probably because his Reflux was not being treated properly (it turns out he was on such a small dose of Zantac it was doing nothing). And even now he feeds off the breast in the middle of the night. But during the day he stares longingly at the hospital pole waiting for his feed. And again, prior to surgery he ate perfectly well (he more than doubled his birth weight in 2 months). He is pulling his tube out more often and this last time he pulled it out we left it out to see if he would eat. He took about 1 oz from the bottle and then would stop. He breastfed more vigorously during the nite. But still not enough to equal the 5 to 6 feeds of 5oz he gets thru the NG. We are in the greater Philadelphia area. If you know of any clinics we'd greatly appreciate the suggestions. Thank you so much.
Jan 03, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Are you seen at CHOP?? I'd highly recommend them. You are also close by Hershey's Feeding clinic. They are fantastic as well, both are just great.

although a G tube sounds like the end of the world, it was the beginning of Jedd taking foods orally. Prior to that he was just like your son, he would put everything and I do mean everything into his mouth. Except food or spoons or bottles. He absolutely greatly did NOT want those things.

Jedd would try to suck/chew on acorns and then choke on them. He would put nothing else IN or anywhere NEAR his mouth, we were completely baffled. It was weird to say the least and totally frustrated us to no end. We used alot of oral stim tools in him to to help.

How exactly do you administer tube feeds?? Do you hide the pump and pole, do you have him sucking on a pacifier as the tube feeds run?? These are all beneficial to them correlating oral stimulation with their tummy getting full.

Jan 04, 2010
anj
Refusing to eat since having NG tube inserted
Yes, his surgery was at CHOP and his subsequent follow-ups have been either there or at one of their other offices. We have another feed eval this week. I am hoping it is more thorough than the last where they really just asked me questions and did not observe him eating from breast, bottle or spoon. Yes, he is usually sucking on a pacifier during his feeds...he loves his pacifier. I do not hide the pole as it's really hard to do....I drag it around the house with me because he likes to be active while eating...usually in his exersaucer. The feeds are via a machine which pumps the milk through...not bolis (sp) feeds.
Jan 04, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
What kind of pump are you using? We used a Zevex, it was really portable and if you got all the air out of the bag you didn't even need the pole for day bolus feeds. The pump is also really light and really tiny. It's about the size of two blackberries back to back in width and about the same other dimensions.

You could start by putting him in the high chair for all feeds starting now. While the tube feeds are running you can do oral stim things. Do you have any oral tools??? Jedd loved things that vibrated. WalMart sells a vibrating star and Babies R Us sells a vibrating corn cob, Jedd loved that thing....LOL That provides oral stimulation while they are eating, which is a first step along with hiding the pump off of the pole.

You could also start with "naked" spoons during this time as well. Those are baby food spoons with nothing on them. You just "feed" them as if there is food on it. That gets them used to opening their mouth for the spoon. IF you do decide to try one tiny little bite of baby food in the same feeding session as you are doing naked spoons, you need to make sure you warn him first.

For example, do a bunch of naked spoons and then when you come to a spoon with a little tiny bite of food, let him know. Tell him, Oh look a tiny bit of pear, I think you'll like this......ect... We always did an itty bitty tiny bit.

You can also use the pacifier to give him tiny tastes as well. We used to dip Jedd's pacifier in formula or food and give it to him. Again, we'd warn him so he'd know it was coming. Jedd absolutely LOVED his pacifier as well. That is such a great thing for a child who will not take food orally. It helps to keep the muscles up.

We were advised to let him keep the pacifier as long as he wanted as long as he was still getting tube feeds. He used his all day long until around 18/20 months old and at night full time until he was around 2 years old. We weaned him from it and then started switch down in class of meds and had to give it back at night. We were finally off of it around 2.4 years old.

If the clinic you are going to is not even watching him eat, I'd talk to the GI when you get there soon and ask about going to Hershey's program for an eval. You can call them and ask to have an information packet sent to you in the mail.

Here is an overview of some of their staff from their website:

http://pennstatehershey.org/web/feedingprogram/patientcare/findaphysician

The Dr associated with this program was at KKI in Maryland, this is a VERY good thing. KKI is the leading program in the world for Pediatric Feeding Disorders.

I actually know (online) one of the professors at Penn state who teaching in the feeding disorders program they have for students. He highly recommends Hershey's and KKI. You would not be disappointed going to either program or contacting them.

We were seen at Richmond's Feeding Program on an out patient basis. You can see if you can do that as well. We just travel the hour away about every 4-6 months. They would eval Jedd again AFTER watching him eat and give us suggestions. It was beneficial for sure. We were doing that in the hopes that we would go their for intense therapy in patient. We eventually with the help of Early Intervention, did NOT need to go.

I hope this helps some. Let me know if you have any other questions. I have been made a volunteer by PAGER it's just not added to my name yet and my info is not added to give out yet.

Jan 24, 2010
anj
Refusing to eat since having NG tube inserted
Well our second feeding team appointment was a disappointment to me. They watched him try to eat via spoon and that was it. They then tried to get him to take his milk using a small shot-glass like cup with measuring marks on the side. He drank about 1oz. They're suggestion from that was to stop trying to bottle feed him altogether; only try to feed him rice cereal once a day and breastfeed in he middle of the night when he's half asleep and begin each NG feed with a "shot" of milk. They are obviously stumped. His reflux is being controlled with the Prilosec, and his GI tests all came back negative. They have no idea how to deprogram him and I'm completely frustrated. They are not proponents of putting a G-tube in because there seems to be no reason for him NOT to be eating and keep telling me to just be patient. Especially since he was such a voracious eater prior to his surgery. His heart is strong. He is just stubborn and wants his belly to be filled without having to do any work. At 6 months old my husband and I don't see any end in site with this NG tube. Our son is content getting fed through that....there is no incentive to eat any other way. So after 4 months of "being patient" I think we are going to have to get in touch with the Hersehy program...we are at our wits end. And to top everything, our son is now pulling his tube out on a regular basis! Thank you again for your input. It is comforting to know I'm not alone. I'm a very positive person...but this is really starting to beat down my positive spirit.
Check with your
doctor first!