April 29, 2014 – An update on feeding therapy

Yesterday, during occupational therapy, Roger’s new therapist proclaimed that she believes the best approach for feeding therapy for Roger is inpatient treatment.  His denial of food is mainly behavioral.  At one time it may have been caused by reflux or a sensory issue, but has now it has developed into a behavior.  At inpatient therapy, there would be five feeding sessions per day at 3 meals and 2 snacks, as well as other therapies sprinkled in throughout during the day.  I contacted the hospital where the therapy would take place to ask how long the waiting list is, what insurance covers, and my ability to work while we live there for five weeks.  The wait list, once the evaluation occurs, is 4 weeks.  His evaluation is May 15th.  She said they are at full capacity for the beginning of June but there are still summer openings.  Insurance, if it does cover this treatment, covers it 100 percent (after deductible). And the answer to my last question was more vague — they have wi-fi.

Today, we had our first appointment with a behavioral psychologist.  I was all over the place describing Roger’s behaviors, my concerns, issues in the house, etc.  One area I have extreme issues with is guilt.  I feel terribly guilty when I see Roger uncomfortable or frustrated in his therapies.  I believe my biggest fear of inpatient feeding therapy is how uncomfortable and difficult five feeding therapies will be for Roger and how much guilt I will feel each day there.  Another concern I have is that if the therapy was during the school year would the break in his daily school routine cause regression in other areas.  I brought up the guilt and the feeding therapy with the psychologist.  Her retort was that feeding/food/nutrition was more important.  This was even prior to me listing the items Roger will eat:  goldfish, pirate booty, veggie straws, oreos, freeze dried blueberries and strawberries, chocolate pop tarts, gummy bunnies, and popsicles.  If we are lucky, he will consume part of an apple, french fries, pizza and potato chips (How funny it was that Rob was thrilled Roger ate potato chips…he talked about it for days)!  Where does he get his protein? was the psychologist’s big question.  He doesn’t intake any protein.  He only intakes fat and sugar.  That is why we are seeking feeding therapy.  His weight is normal, but he has zero nutrition.  Hearing how blunt she was about the feeding therapy and that is the most important issue for him right now (as echoed by OT) has eased my mind a bit and made the decision easier (when the time comes).

There are other issues we have:  Roger will not do anything to help himself get ready for school or for bed — if I change his diaper, he will not even help pulling his pants up.  We still co-sleep and I am almost a walking zombie from lack of sleep.  Meltdown, being a dictator, his sad streaks, etc….

One step at a time.  First, I need a nap!

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