Tuesday, December 18, 2012

Paying the Sunshine Forward

The other day, Megan and I took Aidan to lunch with us.  We do this often, because he's generally a well-behaved lunch buddy.  He watches Blue's Clues or plays Peekaboo Barn on my iPhone while we eat, then we feed his tube.  It's a routine we're all pretty comfortable with, and it doesn't generally attract much attention, because we're the subtle types.

On this particular occasion, we were approached by a woman and her young daughter.  The little girl was probably about 3 or 4, and they walked up behind Aidan as he was being fed.  Every muscle in my body tensed as I waited for whatever ignorant, uninformed, or flat-out rude comment was about to come our way.  People seem to say the most idiotic things when they see something outside of their (very narrow view of) normal.

I was wrong.  I've never been so glad to be wrong :)

This woman and her daughter were patiently standing behind Aidan, waiting for the right moment to tell us that they knew what we were going through, and that they'd been through it too.  The little girl was NG-tube fed for a year (a YEAR on an NG, which basically means this woman should be nominated for sainthood or something, because I don't know if we've all forgotten or not, but Aidan pulled that sucker out like seventy times a day).  What they wanted to tell us was that they'd been through it and that it got better.

Obviously their situation was different than ours - no two situations are the same - and I don't think we'll be tube-free in the next year - but I can't get over how kind it was of this mother to pass along some hope.  She told me that someone once did it to her - stopped her in a mall and let her know that their child had been a tubie and that it got better for them.  It meant so much to her that she decided to do it too, if she ever got the chance.

I've come to think of this as Paying the Sunshine Forward, and I hope to get the chance to do it soon, myself.

Have you run into other tubies out and about?  Will you be Paying some Sunshine Forward and giving some hope to a family that's just starting down a path that you've already traveled?  I'd really love to hear about it :)

Thursday, December 13, 2012

Omelets and Influenza

I've written before about the flu shot.  Do we get it?  Do we skip it?  With an egg-allergic kid, it's been tough to figure out what to do.  And I really haven't gotten a ton of helpful advice from our doctors, to be honest.

But according to information released this year, several studies have provided more evidence that the flu shot is safe even for those who are anaphylactic to eggs.  In fact, the CDC officially no longer considers egg allergy to be a contraindication to receiving the flu shot.

Accordingly, there have been some changes to the recommended procedure for egg-allergic individuals:

  • skin testing is no longer necessary prior to receiving the flu shot
  • two-step administration is no longer necessary
  • Children with a history of hives reactions may receive the flu shot at their pediatrician's office.  Children with a history of egg-induced anaphylaxis may receive the flu shot at their allergist's office

This is really exciting news, and I felt very confident as I had Aidan's shot done by his doctor this year.  For what it's worth, no reaction whatsoever :)    

The benefits outweigh the risks, guys.  Please get those flu shots, at least for the little ones.  A toddler with flu complications like pneumonia, bronchitis, or worse is just heartbreaking. 

Tuesday, December 11, 2012

"Just Sugar" Treats!

So, it turns out that there ARE treats out there for EGID kids :)  And actually, these would be a great allergy-safe treat for any kid in your life.  Nothing wrong with plain old sugar (in moderation, of course).

KFA's latest newsletter tipped me off to this ultra-cool Just-Sugar Christmas Tree Sculpture.  All you need is sugar and water!  It's easy to see how this would translate to lollipops for pretty much any occasion, too.

Check out the Kids with Food Allergies website for more awesome recipes and tips for allergy-friendly cooking and baking this holiday season!

Friday, December 7, 2012

Top Ten Myths of Mealtime in America

I have to share an awesome article that I ran across this week in a support group for families dealing with feeding disorders.  It comes from the SOS Approach to Feeding website

For those not dealing with feeding issues, food is less than an afterthought.  It's easy, you "just do it," and "that kid who won't eat" was probably spoiled by his parents.  Why else would he demand nothing but pudding when faced with a plate of chicken and green beans?

But here's the thing.

For so many of us, it's not easy.  It's not easy at all.  So many of our children can't or won't eat, and it's not because they're bad or picky and it's not because we haven't tried all of the most fun and appealing plates and forks and cups, and it's not because we obviously always give in and let them have whatever they want.  Feeding disorders are real and living them is a daily nightmare for so many families out there.

Without further ado, the Top Ten Myths of Mealtime in America:

Myth #1 = Eating is the Body’s number 1 priority.
Why it is false
Actually, breathing is the Body’s number 1 priority. Without good oxygenation, eating is difficult because we shut off our airway briefly with every swallow and our oxygen level decreases slightly (or we have to significantly increase our respiratory rate to maintain oxygen such that we are burning off any calories we take in). Postural stability (“not falling on your head”) is actually Body priority number 2. Eating is only Body priority number 3. If either breathing or postural stability are compromised, eating may be resisted.
Myth #2 = Eating is instinctive.
Why it is false
Eating is only an instinctive drive for the first month of life. From birth to 3-4 months of age, we have a set of primitive motor reflexes (e.g. rooting, sucking, swallowing) which help us eat while we lay down pathways in the brain for voluntary motor control over eating. Between the end of the 5th or 6th months of life, these primitive motor reflexes “drop out” and eating is essentially a learned motor behavior after 6 months of age.
Myth #3 = Eating is easy.
Why it is false
Eating is the MOST complex physical task that human beings engage in. It is the ONLY human task which requires every one of your organ systems, and requires that all of those systems work correctly. In addition, EVERY muscle in the body is involved (one swallow for example, takes 26 muscles and 6 cranial nerves to coordinate). Plus, eating is the ONLY task children do which requires simultaneous coordination of all 8 of our sensory systems. Learning, Development, Nutrition and the Environment also have to be integrated in to make sure a child eats correctly.
Myth #4 = Eating is a two step process; 1 = you sit down, 2 = you eat.
Why it is false
There are actually about 25 steps for typically developing children and 32 steps or more for children with feeding problems, in the process of learning to eat (see the Steps To Eating handout).
Myth #5 = It is not appropriate to touch or play with your food.
Why it is false
Wearing your food is part of the normal developmental process of learning to eat it. You can learn a great deal about the foods, BEFORE they ever get into your mouth, by touching them and playing with them first. It is “play with a purpose” that teaches a child the “physics of the foods” before the foods ever get into their mouth. Being messy is an important part of learning to eat.
Myth #6 = If a child is hungry enough, he/she will eat. They will not starve themselves.
Why it is false
This is true for about 94-96% of the pediatric population. For the other 4-6% of the pediatric population who have feeding problems, they will “starve” themselves (usually inadvertently however). For the majority of children with feeding difficulties, eating doesn’t work and/or it hurts, and NO amount of hunger is going to overcome that fact. Children are organized simply; if it hurts, don’t do it. If it doesn’t work; cry and/or run away. Also, for children who have skill or medical problems with eating, their appetite often becomes suppressed over time, such that they no longer respond correctly to appetite as a cue to eat a sufficient number of calories.
Myth #7 = Children only need to eat 3 times a day.
Why it is false
In order to meet their daily calorie requirements, children would have to eat adult sized meals if they only eat 3 times a day. Given their small stomachs and attention spans, it takes most children 5-6 meals a day to get in enough calories for proper growth and development.
Myth #8 = If a child won’t eat, they either have a behavioral or an organic problem.
Why it is false
Various research studies, and the data from our Center, indicates that between 65-95% of all children with feeding problems have a combination of behavioral and organic problems. If you start with a physical problem with eating, you are going to quickly learn that eating doesn’t work/hurts and a set of behaviors to avoid the task will become set into place. If you start with a purely behavioral/environmental reason for not eating, your compromised nutritional status or lack of experience will quickly begin to cause organic problems. As such, it is not useful to create a dichotomy in diagnosing or treating feeding problems.
Myth #9 = Certain foods are only to be eaten at certain times of the day (ie. Breakfast foods only for breakfast, lunch foods only at lunch, snack foods only at snacks, dinner foods only for dinner), and only certain foods are “good for you”.
Why it is false
Food is just food. It is not breakfast food, or lunch food, or dinner food, or snack food, or junk food. Food is either a protein, a carbohydrate or a fruit/vegetable. While some foods do have more nutritional value than others, labeling foods as “good” or “bad” or “only to be eaten at X meal”, is not helpful in teaching children to eat or to have a healthy relationship with food. If a child eats chicken and peas best at breakfast, that is okay. In addition, the so called “junk” foods actually play a huge role as stepping stones in teaching children with feeding difficulties to learn to eat a wide variety of other foods because these “junk” foods are typically easy to manage from an oral-motor standpoint, and/or they have a large sensory appeal.
Myth #10 = Mealtimes are a proper social occasion. Children are to “mind their manners” at all meals.
Why it is false
Actually, eating comes first. Manners come second. The skills for eating need to be learned first, before children can have good manners. Think about the 6-9 month old infant just learning to eat and how messy they get. Especially for children who have not learned to eat well, mealtimes are a Teaching Opportunity and we parents are the Teachers. Children eat so much better when their food is engaging, interesting and attractive. They also eat better when mealtime conversations are focused on talking about the food, and when adults are modeling how to eat and teaching the “physics” of food. So go ahead, enjoy your food and the feeding experience with your child! Be noisy, be messy and play with your food!!

So why do I think this article is so great?  Well, mostly because it says what I'd like to shout from the rooftops.  Eating is SOMETHING.  It's not just an instinct, it's not just something the body does on its own.  It's HARD WORK, it's NOT EASY, and the next time you want to judge a child's "atrocious" table manners or overly "picky" proclivities, please consider that this child may be struggling to learn something that you've known how to do since you were but a few months old.