Helping Children Through Difficult Medical Procedures at Home

As some of you may know, Dr. Foster Cline and I (Lisa Greene) have an "Ask Dr. Cline Q&A" section on our website. Here we have parents submit their questions for "real life" advice on both every day ordeals and out-of-no-where experiences. Below we discuss an issue with a concerned grandparent on the struggle of medical treatment adherence.

*********************

Question: My 7-year-old granddaughter had an appendicostomy about a month and a half ago. We are challenged with the protocol each night that requires inserting a tube into the belly button and using a feeding bag enema, solution is inserted and she sits for one hour to produce a bowel movement.  This procedure will allow her colon to shrink to normal size and she will hopefully, someday be able to have normal function. This should take anywhere from 4mos to 2yrs. I can't even imagine the long road ahead.

My question is: she fights us tooth and nail each night, takes three people to hold her down for a 10 second procedure to insert the tube. The rest of the protocol goes smoothly. We have tried empathy, rewards, and have exhausted all avenues. Any suggestions? She is very smart and knows all about this and understands, but still puts up a violent fight.  Any help would be greatly appreciated. Thanks so much.

Hi L:

Sorry you are having to go through this. It sounds like it's very hard on everyone. Here are some ideas to try:

First, are you SURE there is no pain involved? Belly buttons can be pretty sensitive areas. We know it sounds simplistic but have you ever sat her down and asked her what the challenge is and what it would take to do the procedure calmly?

It would sound something like, "Honey, I'd like to have a chat with you about something. Is now a good time? Would you like some ice cream or a cookie with me?" (This sets the stage for a friendly talk). As we both know, putting your tube in at night is hard. Do you have any ideas about why this is? And do you have any ideas about how we might make it easier?"

She'll probably say something like: "I don't want to do it." That's when you give her empathy and reflect her emotions and say something like, "Oh, I know honey. It IS hard and you don't like it. And what did the doctor say?"

"To do it."

"Right. And do you remember why?"  Let her answer and basically give herself a lecture about why to do it.

Then, ask her if she has any ideas about how you could make it easier. You might ask her if eating a favorite candy during the procedure might help or watching a favorite show would distract her. Maybe popping on some earphones of a favorite song would help. 

Brainstorm together on ways to make it easier but the key is to let HER lead.

If she doesn't cooperate or come up with ideas, end with, "Well honey, I was hoping we'd come up with some ideas here. This procedure is not a choice. And you can decide to make the process easy each night or hard on everyone including yourself. And that would be really sad for you. Please give it some thought." And then walk away knowing that you will come through with consequences later (with the Energy Drain).

Before the procedure, always give her CHOICES. Would you like to do this now or in five minutes? On this chair or this chair? Holding your bunny or your bear? You get the picture. And ask her if she has figured out a way to make it easier.

If she doesn't cooperate, and it continues to be a battle, then do what you've been doing, hold her down. You've got to get this done or you are negligent. But then, the next day, have an ENERGY DRAIN because of her behavior. Here is a link to an article on The Love and Logic® website that explains what this is and how to do it: Energy Drain 

There is also a great Love and Logic® CD called "When Kids Drain Your Energy" that will really help give you some ideas.  

You might also ask your doctor at the next check up about having a child life specialist work with her. Children this age can work frustrations out through play and child life specialists are experts at this. You can work with your granddaughter at home by giving her the tools to do the same procedure to her dolls and stuffed animals: tubing, medical tape, doctor supplies. Ask her to do the same procedure to her dolly and see how she does. If you want to be playful, you could do a role reversal: you can "be" the dolly and act up during the procedure and encourage her to be the grownup trying to help the dolly. Don't lecture her about that's how you feel when she acts up, just be silly and play with her, have fun.

I hope this gives you some ideas. The key is to be calm, matter-of-fact and businesslike when she reacts badly. Adding anger and frustration (a natural response!) will only make it worse. Then, add the consequences later, the next day, with the energy drain.

Take good care- hang in there.

Our Best,

Foster and Lisa

                        *********************

Lisa C. Greene is the mother of two children with cystic fibrosis, a certified parent coach, parenting educator, and public speaker. She is also the co-author with Foster Cline, MD of the award-winning Love and Logic® book “Parenting Children with Health Issues.”   For more information, visit www.ParentingChildrenWithHealthIssues.com

© Copyright by Foster Cline, MD and Lisa Greene. All rights reserved.