Wednesday, 6 February 2013

Solving the Feeding Riddle

Eating.  Who would have guessed that such a simple, fundamental thing could cause such headaches?  My first child…the one with autism…was a great eater.  And I thought I had seen it all with her.  But my second child brought a whole new set of challenges to my life.  My sweet Skylar was diagnosed with sensory processing disorder at only 15 months old and her biggest symptom was feeding….or lack thereof. 

So what do you do when you have a child that won’t eat?  Or is so picky that she only eats 5-8 foods?  And they have to be prepared a certain way….at a certain temperature….at a certain time? 

I found out the hard way that solving the feeding riddle is not easy.  There are a lot of components.  For example:

If a child has an aversion to textures….like anything not crunchy or not 100% puréed or anything with mixed textures like soup, then they likely have an oral-motor problem.  If the child gags on food, then the child likely has a developmental delay in swallowing.  Did the child learn to move food around their mouth properly?  Likely not.  As a result, the child gags for fear of choking. 

However, there are other reasons for gagging too.  There are medical reasons like reflux or Eosinaphilic Esophagitis.  There are behavioral reasons.  Sometimes these are self-taught behaviors when the child is experiencing pain.  There are several sources of pain including constipation, chron’s disease, celiac and others.  They learn to be very wary of food very quickly because food is associated with pain.  And lastly, there are sensory related issues.  Occupational therapy can help a great deal with feeding in some kids.

Here are some tips from our Occupational Therapist that may help with your child:

1. Put one thing on the plate at a time, so not to over-stimulate the child visually. Add more as tolerated. 

Skylar is shown below with only a tiny amount of rice on her plate.  That is all she could tolerate seeing at once. 

2. Use salt. Salt stimulates the salivary glands and makes you hungry.  Starting a meal with something crunchy and salty can actually warm up the mouth and get it ready to eat.  And most kids like salt.  Adding it to veggies or other food is really not a big deal. You can always pare back.  

3. Find a spread they like and add it to fruit & veggies to get them to try new things. In the beginning, we used Nutella on sliced apples, mangoes, etc.  My daughter would try almost anything if it were doused in chocolate. 

4. Do the “smell it, kiss it, lick it” approach with each new food. Just getting over that hurdle is big for some kids.

5.  Use a reward system.  A sticker chart works well.  Work on one food every day until he or she will eat it consistently.   

6.  Practice eating in the morning or afternoon when the day's sensory activities have not brought the child to exhaustion.  Dinner-time is particularly hard.  And practice in a quiet environment with soft soothing music when the child is hungry.

 Here is Skylar at feeding therapy.

I’m here to tell you that juggling a non-verbal child with autism and a toddler who does not eat is no walk in the park.  Let’s just say that we spent a LOT of time at the Occupational Therapist’s office.  She would go to parties and not eat anything because she simply could not eat in a stimulating environment.  This would lead to meltdowns.  People were confused as to why she would not eat.  I would usher her to a corner to feed her anything just to get something in her to sustain her until we got home.  Chocolate cake. Whatever.  I just needed her to eat.  When we got home, I worked on feeding with her constantly.  Hours every day. 

And so, my daughter with SPD and feeding problems did four years of OT and after all that could finally eat almost half of a turkey and cheese sandwich and a tiny bowl of mac & cheese (at different times of course), but she still struggled with most other foods and it took her a LONG time to eat.  In all other sensory areas, she was thriving.  So we were “graduated” from OT and off she went to kindergarten.  But then the headaches started.  At least once per week.   And the tummy aches that she had always complained of got worse.  And dinnertime was still a battle EVERY day. She was five years old.

I had to understand what was happening.  I finally ran an IgG blood test on her to check for food sensitivities.  Her test came back loaded with them.  Twenty-six of them ranging from severe to mild.  (A sure sign of leaky gut.)  The severe ones included gluten, dairy, turkey and peanuts.  Oh NO!  No more turkey and cheese sandwiches or mac and cheese.  We were back to square one.  My heart dropped.  FOUR years of work for nothing!  I was scared to death.  She was already stick skinny and barely ate.  She ate about 8 different foods.  I had visions of a feeding tube that I tried to suppress.  By this time, she was nearing her sixth birthday.  I sat her down and explained that the test showed that she is allergic to some foods and she is going to come to the store with me to pick out some new foods she would like to try.  She was reluctant, and after crying agreed to try.  My oldest (due to IgE food allergies) was on a gluten free, dairy free, egg free diet, so I had some experience in this area. 

It took some coaxing for her to try “new” crackers and “new” chicken nuggets, but my child who had always been severely averse to trying new foods did very well.  Yes…I bribed her with small toys the first few times to get her to try the foods, but after that, she did well.  In fact…the strange thing was, that as the months passed, she slowly grew more willing to try new foods.  And oddly, her headaches were gone.  Never to return.  As were her night terrors that she had suffered from for years.  And thankfully, she started to gain weight.  But she still had tummy pain.  Six months later, the next stop….the pediatric GI doctor.

They did a complete workup and the doctors were concerned that she may have Eosinaphilic Esophagitis (EoE).  Her older sister has it, yet Skylar seemed to display the clinical signs:  drooling, sometimes regurgitating food, very selective diet, extremely slow eating.  Although these things had gotten better since her diet change, it was still a problem.  They decided to do an endoscopy.  Thankfully, it came back clean.  However….she was off all allergenic foods at the time of the endoscopy, so we truly don’t know if she does have this problem or not.  Her sister’s EoE cleared with removal of allergenic foods.  

This is Skylar after her endoscopy.

In addition, an x-ray showed she suffered from severe constipation and blockages in her GI tract.  This was shocking to me as she had regular bowel movements everyday.  Apparently, just not enough.  After several weekends of cleanouts with lots of magnesium citrate, she started to eat better and her complaints of tummy pain started to wane.  A second x-ray still showed she was still moderately constipated.  We continue to work on clearing her out and getting her pooping normally.  And through all of it, her eating has gotten better.  She started to eat granola cereal with rice milk!  A mixed texture food.  The one she struggles with the most.  Then she started eating soup.  We started with the broth.  Just one or two spoonfuls.  Then she ate the GF noodles and chicken out of the soup.  Now, she is finally starting to eat them together. 

Then we discovered Syntol.  A probiotic and digestive enzyme that targets yeast.  A wonderful side-effect is hunger.  It works best when you start on high doses. (12/day, then work down) My child is now coming home with everything eaten from her lunchbox! This is an enormous feat.

Lastly, I have started her on a zinc supplement which has helped her in trying new foods.   The major zinc protein in saliva is called gustin.  Gustin influences your sense of taste.  Because of this relationship between zinc and taste, and because taste and smell are so closely linked in human physiology, impaired sense of taste and smell are common symptoms of zinc deficiency.  Supplementing with zinc can help kids with feeding problems.   Click here for the study.

We have always used liquid zinc because if you are zinc deficient, then you can’t taste it.  I am waiting for the day that my kids say…”yuck!  This juice tastes gross.”  That is the day I will know they no longer need the zinc. 

Please don't mix the zinc with an acidic juice, like orange.  If you do, it is sure to give the child a tummy ache.  

This is a long battle and we are still working on it, but she eats with the family now.  She eats what we are eating.  It still takes her longer and she eats less than the rest of us, but she has made huge strides with these interventions.  Here she is eating her gluten free spaghetti dinner with a full salad.  She ate the whole thing!  

No comments:

Post a Comment