Wednesday, August 4, 2010

Play picnic


I can't write about picnics without linking to Lucia's favorite Sesame Street clip Ladybug picnic. It's a classic from my childhood.


Lucia decided to wear her goggles during this play picnic...for better hallway vision!


We've been having "play picnic" now for over a week, and it's going well. Lucia is trying new foods. She's touching foods that used to creep her out. She put an egg salad sandwich on her plate. Of course this makes sense. Studies have shown that it is very hard to learn new things when one is stressed. I believe the stress level in our family is way down because we have given up the expectation that Lucia will eat. The goal is to have fun!


Our OT tells me that studies have shown that the part of the brain that processes tactile sensation and the part of the brain that processes taste sensation are very, VERY close. I've seen this in action. After Lucia plays with a particular food for a while (rubs it in her hair and ears), it is only a matter of time before she tastes it.


Here are the guidelines from Graz clinic on "play picnic" (usually held around noon time):


1) More than one kid is ideal for this exercise (I think that this has to do with modeling behavior).

2) Spread a blanket out on the floor.

3) On the blanket put out a bunch of child-sized dishes with a variety of different foods (different textures, colors, food groups, etc.).

4) Sit down with the kids.

5) DO NOT OFFER THEM ANY FOOD. There is to be NO expectation that the kid(s) will eat.

6) Do not clean up messes, wipe faces,etc. unless a kid asks for help or when the meal is finished.

7) Feel free to eat. If a kid offers you food (even if you don't like it), then you should eat it!

8) The goal is for the kids to relax, enjoy themselves, and have fun!


You can see psychologist Markus Wilken participating in a play picnic in this video. He actually tosses some food at one point...too funny!


This developmental model is deceptively simple. You may be thinking...why didn't you do this years ago? Most kids play with food starting around 6 months of age...


Well, there are a few reasons:


1) Post-traumatic stress. Lucia was very traumatized by her severe and painful acid reflux. She was scared of swallowing and the pain it caused.

2) Bad advice. After her g-tube was placed, we were referred to our first occupational therapist. The therapist put Lucia in a high chair and offered her foods. We were told to be persistent with offering a spoon because it is easier to deliver high-calorie foods with a spoon. At the same time, we were told not to make eating an issue. Not make eating an issue?! After reading the Graz research, I am convinced that ANY expectation that the kid will eat CAN make eating an issue (even positive reinforcement and rewards). The medical community perpetuates a dysfunctional system. They tell you not to make eating an issue, yet they pressure you to reward (and sometimes punish) your kid so that they will eat more. Exasperating!!!

3) Parents also experience stress from oral aversion. Many parents lose confidence in their own judgement and/or ability to feed their kid when there is an oral aversion and/or life-threatening illness. Sadly, I was one of these parents for a while. It's convenient for therapists to blame the parents when their behavioral protocols don't work. So more guilt and stress is piled on parents, and (make no mistake!) the child intuitively picks up on that stress.

4) Loss of appetite/interest in eating due to g-tube feedings. Folks, the research is in, and it shows that tube-fed kids don't experience hunger and fullness in the usual way. They don't feel the deep hunger that an oral eater does, so they don't respond to hunger by eating. They may not even recognize hunger when they feel it. They haven't established deep neural connections with hunger and satiety.


I am convinced that the stress cycle must be broken in order to move forward. Chronic stress can prevent the autonomic nervous system from activating the relaxation response. A chronic state of stress (for example because a child is frightened to eat and people are trying to feed her), can mean that she is in a perpetual state of fight or flight. Chronic stress can inhibit one's ability to learn. Learning happens best when we are relaxed and curious. This is why play picnic works so well. It COMPLETELY takes the pressure off of the child and the parent because there is no expectation to eat.


Studies show that people learn most deeply and creatively when they are intrinsically motivated. Google "intrinsic motivation" if you want to learn more. When hunger is present, it is a deep internal motivation. Hunger inspires curiosity and experimentation in infants. No amount of rewards, praise, or even punishments can motivate a child to eat like hunger.


I have felt like we hit a wall with Lucia. Without hunger, she has no motivation to eat. Trying to reward her to eat has only further reinforced her oral aversion and perpetuated problems in our family dynamic. Our older son feels that she is getting more attention, so he is disruptive at the table and sometimes refuses to eat.


Bottom line: I think that occupational therapy for sensory problems, organizational problems, etc. has been helpful. I'm done, however, trying to coax my kid to eat with rewards. It hasn't worked. It's backfired.


Our family is finally enjoying mealtimes again! The doctors admit that this might work (they don't have a better plan) and are willing to try this three-week g-tube feed reduction to provoke Lucia's hunger. And I have hope because love "always hopes." I am truly grateful that we are loved.


More research on play picnic and hunger provocation:


From Each Side of the Tube: The Early Autonomy Training (EAT) Program for Tube-dependent Infants and Parents

Prevention and treatment of tube dependency in infancy and early childhood

Standardized tube weaning in children with long-term feeding-tube dependency: Retrospective analysis of 221 patients

Discontinuation of tube feeding in young children by hunger provocation




Tuesday, August 3, 2010

Like Water For Chocolate

This is the story of my daughter, Lucia, age 3 1/2, and how she is learning to eat. She likes to mix water and chocolate, soak raspberries in gatorade, and decorate her pants with pink icing. She polishes our dining room table with chocolate pudding (it leaves a nice glossy sheen!), and then licks her fingers. It's surprising (to me anyway) that "play picnic" is such an effective therapy. But more on that later...

It's been an interesting journey so far. Lucia has Cystic Fibrosis, GERD (controlled with medication), and a Mic-key button.

At 5 months of age, she weighed in the 50th percentile. Then her calorie needs increased because of her CF, and she wouldn't eat or take a bottle because of the horrible pain associated with acid reflux. The trauma of so much pain left her orally averse. So at 9 months of age, she failed to thrive and her lung became infected. We hospitalized her and (gratefully!) placed a Mic-key button. The button saved her life. She passed a swallow study. Compounded omeprazole was prescribed for her acid reflux, and for the first time in her life she stopped throwing up.

As the calories cascaded directly into her belly, she began to rapidly catch up in her development. Over time, we figured out (with the help of an occupational therapist) that she had Sensory Processing Disorder. She was averse to certain textures and dispraxic in her oral motor function. She received occupational and speech therapy with much success. When she was hungry she ate (her intake by mouth was around 35% daily). But in the spring of 2010 she became iron deficient. The doctor put her on an iron supplement which upset her tummy and a new "complete nutritional formula." The nutritionist also increased her calories. Needless to say, Lucia was not hungry. She was receiving 1800 calories daily via g-tube. At this point, she was only eating between 5% to 10% orally.

She was also throwing up, grunting, burping, hiccuping, and experiencing digestive discomfort from the formula. I found the Blenderized-Diet Yahoo! group and began blending real food for her tube feeds. An amazing transformation occurred. No more throwing up. No more discomfort. Her energy level increased. She got that sparkle back in her eyes. We are now on our sixth week of the blended diet, and we are noticing other subtle changes; she says that food tastes good. She enjoys food. In fact, she makes delightful slurping and smacking and moaning noises as she eats -- kinda that famous scene in "Like Water For Chocolate." Makes me want to see that movie again. And eat some chocolate. Mmmm....

Through the Blenderized Diet group, I connected with a lovely lady named Olga who shared some studies from the Pediatric Hospital in Graz, Austria about tube feeding in children and tube dependency. What a relief! These doctors understand how futile it is to try to get my child to eat when she is not hungry.

Flash forward to today. I carpooled with our daughter's speech therapist to the Ambulatory Clinic at Lucille Packard Children's Hospital in order to present a protocol for safely reducing my daughter's calories over a 3-week period to induce hunger and (hopefully!) get her to eat more.

The meeting with the doctor, nutritionist, and OT went really well. Basically, they said "you did your homework. Go for it! And if this works, we'd like to use it as a model for other CF patients with tubes." Wow!

So here we are, sports fans! I'm excited, nervous, and hopeful. Lucia still eats a little bit by mouth, so we have that advantage. Every day as we practice the Graz "play picnic protocol" I see her try new foods. Tonight she tasted hollandaise for the first time! As soon as my son goes back to school, we'll begin the 3-week reduction. Stay tuned!