Untying the Knots

When I was a youngster in kindergarten, I was known for my tenacious predisposition within my family, particularly when it came to shoelaces. I saw it as a challenge. I would sit with the laces, systematically and persistently working the tension out of each knot until the lace was restored to its original unknotted state.  Perserverance and patience are character traits that continue to serve me well as a mother and as a caretaker of children.

Seeking help for my son’s eating challenges has been a challenge unto itself.  Our family physician has consistently reported that my boy is growing at a steady pace, maintaining his spot in the 75th percentile.  His sister recently slid from the 75th to the 50th percentile.  There is a noticeable difference in their physical shape.  My daughter is a slim build, with enough meat on her to make her appear strong and healthy.  My son, on the other hand is a bony twig of a child.  I don’t understand the concept of “healthy weight” on a child whose ribs can be counted from across the room.

The doctor first asked me two years ago how the kids were eating.  “My daughter eats anything that isn’t moving too quickly,” I replied, “My son is very particular about what he considers food.”

“That’s normal,” the doctor assured me, “Most kids are picky at this age.  He’ll grow out of it.”

The following year, we had the exact same conversation.

This year, I was assured again that both kids were growing normally, although there was some mild concern about my daughter’s drift into a lower growth percentile.  Further examination prompted the doctor to remark, “He’s quite thin.”

“He doesn’t eat very much.  We offer food, but he won’t eat it.  We wait for him to get hungry, but it never happens.  I don’t know what to do.”

“Kids are picky at this age.  Keep offering the food.  He’ll grow out of it.”  The doctor ordered blood work for both kids, just to make sure there wasn’t anything being overlooked.

The blood work came back showing my son was iron deficient.  His level of iron, according to the doctor, was low enough to be affecting other mineral stores and I was advised to begin giving a daily iron supplement.

I was given the only iron supplement for children available at the pharmacy.  Cherry flavour.  Please, let him like it.

We are now on our second bottle and his patience with the morning “treat” has worn thin.  “We have to keep taking it.  It’s full of the stuff that helps you grow.  You won’t eat the food where your body gets this stuff from, so until we can find a way to help you learn how to eat the right food, we have to keep taking this stuff.”

“I’ll try, Mom, but that other food will kill me.”

“I promise, I would never give you food that would kill you.  You see us eating it.  It doesn’t kill your dad or your sister or me.”

“But it might kill just me.”  The helplessness on my little boy’s face is heart breaking.  He wants to eat what we’re eating and he’s scared to death… literally, of death, to try it.

“Mommy has some friends that might be able to help you learn to not be afraid of food.  Would you like to meet them?”

I might as well have said Santa is dropping off your Christmas gifts early. His response was but a disheartened nod, but in his eyes, I could clearly see hope.

The search began for a dietitian, who we will meet for the first time this Saturday.  Some preliminary e-mail exchanges included a list of Occupational Therapists that we were advised to contact sooner, rather than later.  Of the twelve I contacted, four returned my call.  Only two specialize in eating difficulties with young children.  We have selected a therapist that is familiar with Sequential Oral Sensory (SOS) Feeding Therapy, which is a multi step process to desensitize children with food neophobia and other miscellaneous feeding challenges.  SOS therapy is a slow process that gradually encourages the child to get closer to food, eventually to sample small amounts and ultimately eat it.

The eating disorder clinics at the Hospital for Sick Children and our local hospital both turned us away.  They only deal with recognized eating disorders.  Anorexia and bulimia and for the most part, adolescents.  They just do not have the resources to deal with a six year old afraid of his food.

Through the generous actions and efforts of a good friend, we now have a pediatrician with a background in psychiatry.  Convincing our family doctor to refer us to this pediatrician was another matter.  “What do you need a pediatrician for?” the doctor inquired with indignation.

In my head, I imagined smacking him with a nearby edition of the Compendium of Pharmaceuticals, but instead, I calmly rattled off a rational string of words in this order.  “This particular specialist was recommended by the hospital’s eating disorder clinic and the staff of the hospital’s mental health unit.  The only thing standing between getting my son help and him slowly starving to death is a referral from you.”

I don’t know if he saw me eyeing the hardcover 3,000+ page book, but he started typing and faxed off the referral without another word.  Our appointment is this Thursday.

Getting to this point of having appointments scheduled with professionals is encouraging.   I imagine that unraveling the mystery of what our monster is and what it’s made of will be much like working out the knots in a shoelace.  It’s just going to take some time.

And a whole lot of patience.