My Son Doesn't Want His G Button Out

Yikes, I am trying to think of how we would get Andy to agree. I know how they get when they get an idea in their head.

Is there a food that he just loves. For Andy it is chocolate shakes, a world without chocolate shakes would be living hell for that child. Start with favorite foods and explain how he would not be able to experience that with the feeding tube. Are there activities that he likes that he may not be able to enjoy because of the tube? This approach doesn't tell him the tube is a bad thing only that there are better things out there.

My Andy is 12 and I have learned that the only way he will let go is if he wants to let go. I am trying to give you a few ideas that will make him want to get rid of the tube. The only other thing is knock him out and take out the tube. Yes he will be pissed as hell but if he is like Andy, he will get over it quick. Okay Andy does bring things up from years ago every now and then but it is never full blown why did you do that!!!

Here's an idea that works for potty training and sleeping in your own bed, etc. Hope it's an idea you haven't tried yet.

Make a small book for him. Use his name on every page. Keep it simple. Use words he is familiar with for the tube, what he calls his parents, etc. READ IT OFTEN. Here's a breakdown, fix to fit your situation.

On the front cover, put a picture of him as a baby and now. Write a title that says "_________ is growing up."

First page- have a picture of him as a newborn, maybe in the hospital with you or daddy holding him. Write "______ is born. He is a beautiful baby. Momma and Daddy love him a lot."

2nd Page- Picture of him with tube as a baby. Write "________ needs a fedding tube to help him eat and be healthy because he doesn't know how to eat by himself yet."

3rd Page- Picture of baby in bouncer or swing or something that shows he cannot sit on own or walk yet. "_________ is getting bigger, but he needs a swing/bouncer to help him sit up because he cannot walk yet."

4th Page - Picture of him at 6 mos or so- whenever he started eating on his own. " Now _____________ is starting to eat on his own. He is using his mouth and hands to feed his body and be healthy. Great job _________! Mommy and Daddy are very proud of you _________."

5th Page - Picture of your son now playing with a toy or walking or doing something he couldn't do as a baby. "Wow, look you ____________. You are walking all by yourself, you don't need your baby bouncer seat anymore! You are growing up."

6 page - Picture of son eating now. " Look at how big you are getting ________. You are eating all by yourself. You don't need the tube to be healthy anymore. You are growing and know how to feed yourself. It is time to take it out now."

7th page- However you want to end the book-" mom and dad love you ____." with a picture of all three of you.

If you read this a lot he will hopefully gently incorporate the idea of the tube is just part of growing up. It will be a way to discuss it in the least- and after the tubes are out, you could add a page at the end with him at the doctor or with it out and say something about it, to ease him.

"You used to wear diapers, honey. Then you grew up and switched to underwear. Diapers used to be a part of your life, and now they're not. Just like the tube. You are all grown up and don't need the tube anymore. This is a good thing, son. Just because you won't have your tube doesn't mean that you will be any different. It just means that you are growing up, becoming a young man. Maybe you could ____ like dad does, now that you're becoming more of a man." (My son would insert "shoot a gun" like dad does. Your son might want to 'pretend shave' or 'go camping' or 'ride a rollercoaster' or something like that).

ADDED:
Does he know that his baby teeth will fall out? Maybe rephrase what I wrote above, but instead of diapers, talk about how baby teeth fall out, and adult teeth grow back. And we have those teeth for the rest of our lives. Just like you needed this tube when you were a baby, but now you don't.

E.....there is a support group out there for parents/consumers who are use parenteral (IV) and enteral (Tube-fed) nutrition (homePEN). Called the Oley Foundation. My Husband was on parenteral nutrition for years and we belong to a local Oley support group and attend as many of their conferences as we can.

They have support groups around the country and may be able to connect you to others who have been through this. Attached below is there website and telephone number.

http://www.oley.org/programs.html

The Oley Foundation
214 Hun Memorial, MC-28
Albany Medical Center
Albany, NY 12208-3478

(800) 776-OLEY – toll free in US and Canada
###-###-#### — calls from Europe and elsewhere
###-###-#### – fax

Good luck.
S.

Maybe a reward system will work. Is there a train set he wants or something that us a big deal for him. Bribery can be a good thing.

what if you explain to him, in age appropriate terms, the risks that can accompany keeping anything implanted in the body when it is no longer needed? i have no doubt that this is very traumatic for him, as you have said, he sees it as a part of HIS body. maybe expalin that he'll get to be "just like mommy and daddy" now - show him that you don't have one. how about a couple of appointments with a play therapist at the hospital he'll have the procedure at? good luck - you sounds like an awesome parent! i have a child with very high functioning autism, and it can be so difficult to get them to go with the flow at times :(

Must he get it taken out now? I don't know anything about these. What will happen if he keeps it a bit longer? He might change his mind on his own, given more time.

I think you should enlist the help of the pediatrician on this.
It may be more than a matter of just not liking change, he may have a fear of what will happen if the tube is removed because it's always been there.
It's there, he's eating fine. What if something changes because the tube is removed? Will it hurt?
These are logical things for him to fear, that's why I think maybe the pediatrician can help you with how to explain things to him.
Nutrition is such a necessary thing and you don't want to have fear and eating wrapped up together.

I hope you get some great advice. Best wishes.

Are you having the procedure done at a Children's Hospital? They should have a liaison that can talk to your son about what to expect and how this is a good thing, keeping in mind his Autism and sensitivity. I would use whatever help and advice the hospital can offer on this one, as I'm sure they've had similar issues like this.

You might talk with him and the pediatrician about the health affects of having it in when not needed. If you can explain it to him in a way to help him understand that while it is good to have it (not a negative) if it is left in when not needed then it can cause health problems...If that is a realistic idea (i.e. the Pediatricians help here) then maybe he can understand that its not bad now, but could be later and needs to come out.

Best of luck to you.

I think you have the right attitude: "we're done with it and the future will be better." Can you help him VISUALIZE what his stomach would look like without it? Has he experienced other body changes before that turned out positive? Like a drastic haircut? (P.S. I don't know much about autism except from what I read in Temple Grandin's book. )

BTW- When I was 2, I started wearing eyeglasses all time for a "lazy eye." (And they were the ugly "far-side" beehive-wearing old lady glasses, too!) I remember clearly at age 7 having a fit when the docs told Mom that I didn't need to wear them anymore. So change is tough for kids without autism too. But of course, we "just did it." End of story. Mom took the glasses away and I never saw them again. And life went on.

Hi E.,
Are there other children in your area that you could introduce him to that have been in this same situation? Maybe talking to other kids that could show him they went through the same thing would make him feel okay with it. They could talk about what the space will look like when its gone or how it felt to be without the tube.
Best Wishes!