Feeding issues --peg/button feeding

Kerry - posted on 05/17/2009

hi im kerry my daughter lilly has cerebal palsy and has had a peg put in after 1 half tears with a ng tube which i think made things harder also had fundoplycation and bad reflux i have been told by doctors and dietians that she can be a teenage before she starts to eat and she is 5 at the moment and doctors havent got a clue to why she wont eat as they is no reason to why she wont eat so i know how you feel would like to hear back with anyone who has any ideas thanks kerryxxx

Sue - posted on 05/07/2009

Hi everyone, I have a 3 y.o girl with CP as a result of 3 strokes ( we're in Australia) From birth she has been fed via NGT and had failure to thrive for first 6 months. 2 pegs have failed and further surgery too risky so stuck with NGT for now. She has severe oral hypersensitivity from severe reflux vomiting and tubes and it has taken her years to get food up to and in her mouth, swallowing is the next hurdle! Patience is a virtue and very hard work! Recently we heard a story of a clinic in Austria that has a 95% success rate weaning kids off tube feeding onto eating over a three week intensive program..the link is: http://www.notube.at/, the english version: www.kinderpsychosomatik.at/home/en. This is too an expensive option for us unless we fund raise for it. We'll just plod on with persistence and patience for now. Good luck everyone..you're all absolute stars! :-)

Theresa - posted on 05/07/2009

wow this is my little boy all over hes no longer on oxygen tho our speach and language team sent luke for a video flaroscopy to make sure it was actually safe for him to eat as he was gagging with food . it turns out it was safe to try and he is doing well hes very cheeky tho does well with angel delight but look at it this way while our children are being peg fed they are getting everything they need and they are happy i was gutted when they said he needed one but its the best choice the docs could have made as hes now thriving
just an idea just let your son pick at foods picnics with friends are great as they copy them dont make it a big thing just let him get on with it i will message you my phone number if you want a chat its nice to find someone with all the same needs as us good luck

Trish - posted on 04/26/2009

I don't know if this is of any help to you but I know with my son his meds had an impact on his ability to eat. He had seizures and the medication was affecting his ability to control his muscles sufficiently to be able to eat. With adjusting his meds the feeding got easier. Despite what the dieticians and speech team say, I'd try and perserve with feeding him orally. Good luck and I really hope you can find some help with getting him to eat.

Kate - posted on 04/25/2009

Have you tried feeding him through the peg during the day?

My daughter got hers when she was 2. (she was born at 27 weeks and has cerebral palsy)

We never fed her over night. I've always done it with extensions and syringes on a schedule trying to make it similar to meals for her. Even when she didn't eat solid food we tried to get her involved.

We tried to get her to eat by offering a variety of different foods to her when feeding her through the peg. Sips of liquids, or maybe wiping a piece of fruit across her lips so she would lick her lips. To get her to use her mouth and tongue.

The NUK brushes helped. Or gently wiping her teeth and gums with a wet wash cloth. This helped her get used to stimulation in her mouth.

It took years. Lots of trial and error. Tons of patience.

She is now 17. She still has the peg, but it is only really used for meds or when she is sick, so she doesn't dehydrate. Her primary nutrition still comes from Pediasure. Now she drinks it. Her solid foods are still very limited. She still gags on soft foods. She mostly eats pretzels, cheese nip crackers, and toast. Her favorite food is pizza (typical teen). She's more interested now. Sometimes if we are eating something she never liked or tried before she will ask to taste it. We give a taste. Sometimes she spits back out, sometimes she finishes it.



For us, there wasn't ever an explanation as to why. Her gastroenterologist said it was part of the cp for some kids. Some kids eat, some do not.

This is causing a problem with our insurance. They will pay for the Pediasure, but are now refusing to pay for the peg. (she has a Mic-Key belly button that needs to be changed a couple times a year) They want to know why she needs it. CP is not a good enough reason since not all people with cp need one.



Good luck, Kate

Heather - posted on 04/23/2009

My son has reflux and low muscle tone. We looked into the fundoplication surg, but my son wasn't a candidate. He also had a very very intense gag reflex. We worked with a speech person thru early intervention which brought him up to pureed foods. Our real breakthrough was when we found a speech therapist who specialized in feeding therapy. He is now eating small chunks of things after almost 2 yrs of therapy. Best investment of our time we would have made. We found her at a larger pediatric rehab center

Melissa - posted on 04/22/2009

You may already do this but just another helpful thing. If you or they think he's sensitive get a nuk brush. You can buy them at walmart. Looks like a funny toothbrush and let him play around with that. Maybe to desentisize his mouth. Worth a try, we still use this on my little girl.

Jamie - posted on 04/02/2009

My son is 7 months and we can not get him to take his bottle. He is on an NG tube now and having G-tube placement the 22nd of april. No Fundo, we opted out of that. He was 35wk..iugr..3lb5oz and aspirated for a couple months before we found out. We don't know why he hates his bottle, he has reflux..but not terrible, his MRI is normal, but he has left sided weakness and hypertonia. He's gets PT and OT and speech. He is fine cognitively. Is this CP?

Sarah - posted on 03/30/2009

I am guessing that there is a sensory component to it too. Both my boys have food aversions. My oldest at 13 still has some odd ones. he does not generally like soups or stews. When he was a toddler he did not like things like applesauce, fruit cocktail or meat.

I would do a food diary and write down what he does eat, and try to find similarities in them. Does he like soft foods? crunchy foods? bland ones? Spicy ones? My 3 year old does not generally like to try things like egg/tuna salad, but will inhale fruit...especially with whipped cream. And just the other day he sucked on a lemon without making a face!

Since your son has had the peg for 2.5 years it could be that his mouth is over sensitive now...to where textures hurt and tastes are painfully strong.

Ali - posted on 03/29/2009

Hi Julie - I have a 5 y/o daughter who has Down Syndrome and Autism.  She had a g-tube put in at 2 years of age because of severe reflux and she aspirates off thin liquids (goes to her lungs rather then stomach).  She also had a fundo at 3 years of age.  We didn't feed her any solids for a whole year and just depended on the g-tube for her nutrition/hydration.  We have slowly introduced baby food (pureed).  As we give her more solids, we decrease the amount of formula she is given through the tube.  It has been a slow process (1 year) but we are almost at the point where she will only need the tube for hydration as she is getting enough calories by oral intake. 

Did your son have any surgeries?  My daughter had open heart surgery at 2 mths and they told me that the vegas (not sure of this is how it is spelled but went by sound) nerve was damaged during this surgery.  This nerve tells you when you are hungry or full.  I have my daughter on a strict schedule of feeds as she doesn't know when she is hungry and I also have to stop her at a certain point because she doesn't know when she is full either.  I am pretty sure they told me this nerve could have also been damaged when she had the fundo done.  Maybe ask your doctors or dietician if this is a possibilty.  Maybe he just doesn't feel hungry if that nerve was damaged.  I also agree that maybe an OT would be able to assist with the sensory part of it all.  Not sure if this helps at all ...

Ali

Julie - posted on 03/28/2009

Hi  thanks for the replies,Heather  my little man does eat a little but the problem were having is he wont eat enough also he has a limited things he will eat mainly sausage,cheese(dairylea tri-bites),meat(dinosaur)bread,strawberries,grapes,carrots,roast meats and chicken,green beans,pasta and broccoli and though this seems loads he doesnt always eat these things and just lately hes being more picky on things like no gravy,no bolegnese sauce,no butter etc but has NEVER entertained desserts i think his problems began because the hospital was reluctant to give him a peg so he started solids but these just came up also so put him off big time  Lorenza, no we dont see an ot he has been on the list for over a yr now but at the moment hes just under the speech therapist and dietician but they havent really been too bothered and have only been seeing him regularly for the last 18mths   The problem i now have is that they think he might have underlying problems regarding his bahaviour and they think that this is also contributing to his feeding problems But no-one seems to want to find out was this could be .As i said when i spoke to them last week they gave me the impression they think hes always going to be fed this way because of the behaviour issues I just want answers from them really any ideas how to get this help Thanks julie

Lorenza - posted on 03/28/2009

Hi,

I have a little one that also had a fundoplication at a young age and was tube fed until she was almost 5. We tried everything with her. She has cerebal palsy in the right side of her body and still has problems with her oral sensitivity. One of our hospitals here has what is called a "feeding team". It consisted of an OT, a psychologist and a dietician. We would go in twice a week and play and try different foods. She was taken off the tube to increase her hunger and was put back on twice for wait loss or "failure to thrive". It can be so frustrating when all you want is for them to put something in thier mouth and swallow it. We found out that she has an aversion to soft foods. Puddings, yogurt, whipped cream, ect. Do you have an OT involved? They can do all sorts of things for oral stimulation and such. Also, find out if they have a feeding team or something similar in your area.

We did a lot of playing in food, getting her hands in it because she has a sensory issue with touching strange things. Also, if the kids are never bottle or breast fed, they don't really know how to use their mouths and those muscles. Keep that in mind, it may take awhile, but don't give up!

Heather - posted on 03/27/2009

Hi my name is Heather I have got a 3 and half old little lad called Callum. He was born at full term he has been in and out of icu all his life ,been ventolated 14 times he is also peg fed had a fundoplycation nearly 2 years ago. He had really bad reflux aswell when he was younger the doctors have spoken about him starting to eat again. I am worried that he wont no what to do with food and wont take to it. The doctors did mention to me that it could take quite a while for him to get used to it as food as nice as it may taste to us may taste horrible to him as his taste buds havent had anything for ages. What doeas he do with the food if you dnt mind me asking does he play with it or try it.

Would love to hear back from you

Heather (Sheffield UK)