Our Feeding Story

I am not a doctor, feeding therapist, or any other sort of medical professional.  I am simply a mom with an internet connection who enjoys research.  As such, nothing in this retelling of our feeding story should be considered medical advice.  Please enlist the appropriate medical professionals and therapists to help you if your child exhibits problems with feeding!  

I’m a firm believer that we should always pay attention to somebody’s story, because when we know their story, it’s so much easier to understand them and give them grace.  As such, I want to share our feeding story here – our story of E’s feeding challenges, how they’ve changed and progressed over the years, and the steps we’ve taken to try to help her learn to eat.  Hopefully, reading our story will help you understand why I spend so much time thinking about, talking about, and writing about how children eat!

A word of caution:  Although feeding challenges of some sort are common with children who have Aniridia, they don’t occur in every child…and they often look different in each child.  If you are a parent of a young child with Aniridia and you’re concerned about your child’s feeding, please do not assume that our story will be your story.  Simply use this story to understand where I come from and to know that you are not alone!

Infancy

E nursed very well from the time she was born.  She consistently refused a bottle – although she tried to take it, it seemed as if she just couldn’t figure it out.

E grew well for the first 4 months.  She was always low on the growth chart, but she was relatively consistent with her own curve.  We introduced baby food beginning at 4 ½ months with no success, but continued trying intermittently.

By 7 months it was clear that she was not swallowing ANY food presented by mouth, except breastmilk straight from the source.  We called Early On (Michigan’s early intervention program) in for vision therapy at that time. Because of the inability to swallow, they began feeding therapy as well.

By 9 months, she had fallen off the growth charts, and she essentially stalled at about 16 ½ pounds until she was almost 2.  She continued to nurse relatively well, but while it was enough to keep her alive, it wasn’t enough to help her grow appropriately.

Toddler Years

Due to her failure to thrive, we consulted with endocrinology, neurology, and had a swallow study.  (For the record, doing a swallow study on a child that doesn’t swallow is rather interesting.)  The swallow study simply showed what we already knew – that she didn’t swallow.

For awhile, she would actually suck liquid into her mouth and spit it back out!  (You gotta love it when the speech therapist doing the swallow study says, “I’ve been doing this for 20 years and I’ve never seen a child do that!”)

Neurology scheduled an MRI of the brain, which showed that E was neurologically relatively normal.  Endocrinology showed that her lack of growth was not an endocrine problem, but a lack-of-calories problem.  I continued nursing E 5-6 times during the day and 2-4 times during the night throughout this time, because it was the only way to get calories into her.

We continued feeding therapy through Early On and then added private feeding therapy at around 15 months. Despite all of this feeding therapy, E did not swallow anything (other than breastmilk) until she was 16 months old.  (The first food she swallowed?  An Oreo cookie!  I am not even kidding! Mom of the year, right here!) She then, very slowly, began swallowing and eating a few foods.

Unfortunately, our insurance at that time denied feeding therapy (which we eventually fought and won).  Our private feeding therapist thought E would progress normally now that she’d figured out how to swallow, so we discontinued the private feeding therapy and continued through Early On.

However, months went by, and she did not progress normally with her food.  We could not get her to eat enough to live on (or grow).  (This will become a common theme!)  So we were referred for outpatient feeding therapy again, this time at a different hospital.

After trying outpatient therapy for some time and working very hard at home, we were referred to the DeVos Intensive Feeding Program in Grand Rapids, MI.

At this time, we could get her to eat very small quantities of pureed food (only certain flavors), some peanut butter balls that I made, an occasional cracker, and occasionally some shredded cheese.

Typically, the Intensive Feeding Program had a 15-18 month waiting list.  However, they had us start in 4 weeks, because they said if we didn’t, E would require a feeding tube.

In April of 2010, when E was almost 2, we spent four weeks in intensive therapy (8 hours a day, 5 days a week!). They took her back almost entirely to pureed foods, and took the control out of her hands.

We returned to exclusively spoon-feeding her and offering her all of her drinks, so that she would start to learn to take in enough food to grow.  Over the course of the 4 weeks, she gained a pound and a half, and she stopped nursing because she was FINALLY taking in enough food!

The people at the feeding clinic explained to us that most severe feeding issues have multiple things that combine together to create the feeding “differences”.  In E’s case, that included severe reflux/vomiting, significant sensory processing difficulties in her mouth, an oral motor delay that precluded swallowing appropriately, a hypersensitive gag reflex, and possibly altered olfaction.

As a result of all of those issues, E decided that eating was neither fun nor comfortable, and she therefore decided she simply was not going to eat.  After all, that’s what smart people do – when something hurts or causes anxiety, we don’t do it!

The feeding clinic used a behavioral approach to teach her to eat – when we first “graduated” from the program, she alternated bite-drink-bite-drink, received specific praise after each bite or drink, and played with a toy (i.e., positive tangible reinforcement) between every bite and every drink.  She ate 6 times a day according to a strict schedule.

When we first exited the program, E would gag and vomit at any new food/flavor or if there was the slightest variation in texture.  (Even a fleck of pepper in her pureed food would cause her to vomit. Again, I am neither kidding nor exaggerating.)

She also was VERY sensitive to changes in volume of her food – if she had even 5g more food than usual throughout the course of the day, she would vomit up her entire last meal of the day.  So we had to be very careful to only feed her a certain amount at every meal, and to increase volumes very slowly and very carefully.

For a few years, we quite sincerely fed her in a highchair with 3 nested trays, so that, if she vomited, we could take off a tray and keep feeding her.  This was just as much fun for all of us as it sounds like it would be.  (<sarcasm font>)

This may give you an idea of how sensitive E was to changes in texture:  To advance from completely pureed applesauce (i.e., baby food texture) to gritty applesauce (i.e., the kind you buy in little containers at the store), we worked for over a month.

We started by introducing just a tiny amount (maybe 2 or 3 bites) of gritty applesauce at each meal, sandwiched between bites and drinks of preferred foods. Gradually we moved to 5 or 6 bites, and eventually to a “normal” serving of applesauce.  After 6 or so weeks, she could take in an appropriate serving of gritty applesauce.  It was similar for almost every new food or textural advance that we attempted.

Preschool

When beginning 4-year-old preschool, (2+ years later), she was back on the growth charts again and was consistently taking in enough food to grow well.  She ate 5 times per day, consisting of 150+g of whole milk with Carnation Instant breakfast and 130g of pureed and/or gritty food at each meal.  We weighed every meal to make sure she was receiving enough food.

Her food was primarily still pureed, although we had managed enough textural advances that she could then handle all of her fruits in a gritty texture quite well.

She would eat a few meltable hard solids (i.e., Pringles, crackers), but that’s about the only non-pureed foods she would eat, and she would only eat those when completely healthy – if she had the slightest runny nose, she would refuse everything except what we forced her to eat.

She would occasionally take up to 10 bites of a grilled cheese sandwich.  We still fed her all of her meals, although she was beginning to do a tiny bit of self-feeding willingly.  Given that the feeding clinic felt that she would progress normally to age appropriate textures on her own from there, and the fact that we moved from Michigan to Illinois, they dismissed us from their program.

At that time, we had at least managed to stop doing organized play (i.e., tangible reinforcement) with her during meals, but we did talk with her and talk about things – and she often wanted to talk and play more than she wished to eat!

If there was a new food or new texture that we were introducing, we still typically offered a small amount (4 or 5 bites) of that food inbetween bites of two preferred foods. (I.e., Bite of preferred food,drink, bite of new food, drink, bite of preferred food, etc.)

For preschool that year, she attended a program for visually impaired students in a nearby general education school.  It was an absolutely wonderful program, with great teachers.  Because feeding issues are not uncommon with the blind and visually impaired, they were comfortable handling feeding issues with their students.

As a result of their efforts, E made significant progress throughout that year. She ate an age-appropriate amount of “big girl food” at school for lunch every day, although it took her considerably longer than most of her peers.

She would still not eat fruit, vegetables, or any other type of protein (other than cheese) unless it was pureed to a gritty/finely chopped texture.  Her snacks at school were also age-appropriate, although very limited in variety.

At the urging of both the school staff and her pediatrician, we managed to dilute the Carnation Instant Breakfast to about ½ strength.  The thinking was that she’d never feel hunger if we continued allowing her to fill up and receive her calories via her milk, so they wanted her the chance to feel hunger and desire food.

Early Elementary

Still in the vision program, E had an amazing TVI who worked with her throughout kindergarten and first grade.  She ate lunch with E every day, and encouraged her to eat and drink faster, and also encouraged her to try new “learning foods”.  We would send a few bites of a new food to school and work on the same few foods over and over until she could eat them.

Due to her efforts, by the end of first grade, we had added a number of foods to E’s diet, and had reduced the amount of time/cajoling that was required to have her self-feed enough food to live on.

She could (finally) feed herself a typical lunch, in the lunchroom at school, within a normal lunch period, and she could even eat dinner at home without being constantly reminded to take bites.  (This felt AMAZING!)

She also decided she liked Steak and Shake grilled cheese, so we could actually go out to dinner as a family!  (Woohoo!!)

Given the progress that had occurred, we felt that perhaps we could move to entirely age-appropriate textures, so other than fruits (which continued to be pureed), we stopped forcing her to eat pureed foods.  (I.e., meats and vegetables).  It was anticipated that she would continue to pick up new foods slowly but surely.  (Once again, we were wrong, and in retrospect, letting her drop the pureed meats/veggies was a mistake.  <sigh>  Hindsight is always 20/20!)

Middle Elementary

Midway through 2^nd grade, we moved from Illinois to Florida for a new job for my husband.  By that point, E was drinking primarily 2% milk.  In the last 2 years, she has gained a few new foods but has also lost a few foods.

It has become clear that anxiety is a significant factor in her refusal to try to new foods (which apparently is quite common with children with a significantly traumatic feeding history, like hers.)

As a result, we decided over a year ago to make some changes to how we feed E, based on some books that follow Ellyn Satter’s Division of Responsibility philosophy.  We’ve allowed her more freedom to choose what to eat and have not forced new foods like we have in the past.  She also has a learning plate at dinner, where the foods that are not preferred for her are placed for her to explore.

We also instituted Taste Test Tuesday for awhile (a fun way to taste new foods), which resulted in E adding one food to her preferred list, and we regularly try to have fun with food.

However, her growth has also slowed again, to the point where her doctor would like us to increase her caloric intake a bit.  And she has, if anything, lost more foods than she’s gained. <sigh>

So while I love the DOR philosophy of feeding (and find that it works very well for my mildly picky typical child), and we continue using it at home, we felt she needed something more.  Therefore, at this time, we are also participating in another style of feeding therapy – ABA feeding therapy, which uses principles similar to the SOS feeding philosophy.

Miscellaneous Feeding Thoughts

Here are a few random thoughts regarding E’s eating that also might be helpful to understand her:

• E does not seem to feel hunger and thirst like most children do. She finally started recognizing hunger when she was about 4 1/2 years old, but she still, at 10, would rather starve herself than eat a non-preferred food.
• As is typical with children with this level of feeding issues, E  is extremely particular about the brand of her foods, the appearance, etc. She can tell, without being told, if I accidentally buy the “wrong” brand of pancakes, bread, cheese, applesauce, etc.
• A very positive thing about trying the “Division of Resposibility” approach this last year is that her anxiety has lessened somewhat. She doesn’t have the same level of post-traumatic stress response that she used to have when confronted with a new food on a plate near her.  However, I’m quite sure that if she was expected to actually eat that new food, the anxious response would return in a hurry.

Given all of our feeding history above, I have spent countless hours researching, reading, and learning about feeding problems in children, different types of feeding therapy, and how children in general eat.  Many of those things that I’ve learned have helped me understand my typically developing child, R, and how he eats.  I hope to share much of what I’ve learned here, in case it is helpful to someone else!