Binge Eating and Down Syndrome

A few nights ago I found an empty carton of Dreyer's Chocolate Chip Cookie Dough ice cream hidden under Marie's bed.  I only knew to look for something when I discovered chocolate in her sheets.  The carton was basically full; I was the only one who had eaten out of it and I eat only a few bites at a time right out of the carton.

Marie sneaking food into her room, into her bed, into her stomach is not new.  Yet I still become terribly angry.  Her past binges, such as when she ate Mr. Sexy's birthday cake, come back.  I work very hard to forgive and realize where Marie is at with these issues.  So far I feel completely helpless and struggle with letting go of the past because it feels like she will battle binge eating for the rest of her life.

In fact, last night, I caught her AGAIN.  That's twice in two days.  Michael invited her upstairs to read with us.  Instead, she left her room, saw a spoon that had old, crusty cheese on it, ate the cheese then went back to her room.  I noticed.  This situation feels hopeless.

We have scheduled a doctor's appointment so we can discuss this food issue and her bed wetting issue.  We have exhausted all options in trying to help Marie overcome these obstacles.

Her binge eating and bed wetting go back years and years.  Interestingly, however, Marie stopped binge eating and bed wetting when Mr. Sexy moved them away from V (her biological mother).  They lived this way for about nine months.  No urine soaked bed sheets.  No empty refrigerator by morning time (Marie typically binges in the middle of the night).  Then V re-entered their lives.  Binge eating and bed wetting became huge issues once again and have yet to stop all these years later.

I do believe that these two issues are mostly, if not completely, emotionally related.

That doesn't make it any easier.

Mr. Sexy and I have had a few theories on why Marie continues to struggle.  One huge idea is down syndrome.  Marie seems to have no impulse control.  She sees something she likes so she picks it up and takes it.  Sometimes it's my bracelet I left on the coffee table or one of Evan's toys or a leftover egg sandwich she finds in the kitchen.  Most of us figure out these behaviors are unacceptable at a very young age.

While I believe Marie understands these behaviors are unacceptable, even while she is doing them, there is something that pushes her to do it anyways.  Almost like she can't think clearly.  A connection issue.  The wires in her brain aren't communicating properly.

Marie is very thin which is not the norm for a person who has down syndrome.  I'm not entirely sure why this is.  When I have asked other parents who have a child with ds they are surprised when they hear my stories about Marie's getting up at night to eat a loaf of bread or an entire jar of peanut butter.  I used to think this was something lots of other parents experienced.  Apparently it's not that typical in the ds community.

So that got Mr. Sexy and I thinking.  Marie is thin because we control everything she eats because she has very little impulse control.

 Her first summer visiting her grandparents out of state I freaked out when her Pokni (grandma) was surprised that Marie ate like 3 corn dogs and wanted another.

Marie will almost always say yes to more food no matter what it is.  Most of her conversations, with friends or with herself, revolve around what she has eaten and what is to be eaten next.  Hmmm is this a ds thing or an emotional thing relating to V?

In my experience people who have down syndrome are significantly overweight.  Even the kids.  I don't have any friends who have a child with down syndrome so I cannot speak to their eating habits and exercise habits.  I only assume a lot of kids who have down syndrome eat a lot and maybe what they eat aren't the most healthy choices.  Again, I am guessing and assuming here.  I'm very curious on this issue.

If a kid who has ds cannot decipher between hunger and feeling full, who makes that decision?  The parents, right?  Marie honestly cannot accurately tell us how hungry she is or isn't.  It's a complete guessing game and if we are unsure we add a little more food to her plate - just in case.

So what if she is obsessed with food because we constantly suppress these desires?  What if we gave snacks throughout her day, candy as a reward for a job well done, soda with lunch, ice cream every night, 3 hot dogs if she wants.

I can tell you one thing.  We would have one unhealthy kid on our hands.

We are not interested in teaching Marie unhealthy eating choices.  We are not interested in allowing her to binge eat in the middle of the night and then pretend it didn't happen.

Two barf spots in the clean-up process.

The empty carton of ice cream is still sitting on her dresser as a reminder.  This isn't to be mean or anything like that.  We are aiming to prove a point that she won't forget.  So far the point is being made.  She doesn't like to remember when she has made a mistake.  It makes her sad.  Allowing Marie to throw away the container immediately would be like allowing her to forget it ever happened and move on - only to do it again.  In fact, we later realized that our dog shared the ice cream with her and ate so much that she threw up the next day.  Guess who got to clean up that mess?

It feels like everybody has opinions about these struggles.  I am very interested in the opinions and ideas of parents who have experience with down syndrome and impulse control like what I have described here.

Thanks for reading!