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Wednesday, December 07, 2005

The Starvation Team

I know, I know. Again with the long-time no-posty. Not even to my Fotolog, or Flickr, which as my friends know, is really uncharacteristic! But at least lately I have an excuse, as for the past two weeks I have been sick, sick, SICK with some industrial-grade version of the common cold that has caused me to run a gamut of unpredictable symptoms, beginning with sniffles and a vicious, itchy sore throat of the sort that could tempt you to chug whisky until the pain goes away even though you hate whisky and you're still very occasionally nursing (no, I didn't :P), progressing through chills, fever, body aches, and sinus headaches the size and temperament of New York City, arriving at my current state of 24-hour cotton-headed fatigue and physical weakness spiked with fits of deep-chested coughing that sound so scary the baby will run up to me, put his hands on my chest, and say "NO" very sternly to my ribcage.

And who, you might ask, afflicted me with this disastrous virus? My loving son, Isaac, of course, who expressed his reaction to the illness mainly by waking in the night flushed with fever and refusing to eat more than three bites of food or drink more than a cup or two of liquid a day for FIVE DAYS straight. Which action on his part has caused him to lose a quarter of a precious, precious pound. So, not only have I been very sick; I have been stressing myself half to death watching the dangerously skinny boy eat even less than usual. (Which is probably why I'm still sick, while my husband and son both got over this thing in less than a week).

Needless to say, not so conducive to writing when I don't have to.

But I've been promising for some time now to post about the hospital-administered outpatient feeding program we recently tried with our son, so although I would rather be taking a nap at the moment, here goes.

After a performing multiple tests, including an upper endoscopy (yikes!) on our son to try to discover some underlying physical cause for his poor appetite and inadequate weight gain, only to come up with nothing time after time, a pediatric gastroenterologist we've been seeing suggested that the problem might be strictly behavioral, and referred us to a group of specialists at Cardinal Glennon Children's Hospital known as The Feeding Team.

Consisting of a dietician, a pediatric psychologist, and an occupational therapist, this group is apparently known all around town for using a multidisciplinary approach to help children overcome serious eating issues. After some wrangling with our insurance company over how they planned to charge us for seeing three specialists in one visit, we managed to get an appointment.

After months of searching for answers as to why my son has such a serious problem with eating, I was truly, if guardedly, hopeful that these Feeding Team people might finally really be able to help us. After all, I'd known all along that one of my son's major problems when it comes to eating is a serious texture aversion, and after doing a small amount of independent research on this in books and on the internet, I'd learned that a lot of toddlers with severe food texture issues really benefit from a psychological evaluation followed by occupational therapy.

Musing over what I'd read, I imagined that, perhaps, after thoroughly evaluating my son, these magical people called The Feeding Team would finally discover the root of the problem, and come up with some sort of brilliant custom comprehensive food texture desensitization plan, probably involving applesauce, Play Doh, and popsicle sticks, and after that (I fantasized) through repeated theraputic visits and diligent work done at home, one day in the not-so-distant future I would offer my son a plate of, say, macaroni-and-cheese, and, instead of making a face like I had just set a steaming pile of raw sewage on the table, shuddering, and decisively pushing it away, HE WOULD EAT IT.

So, it was with a positive attitude that I entered the Feeding Team office with my husband and son back in October for the first time.

(While we waited to be seen for that first appointment, I couldn't help but notice that the waiting room featured, among an assortment of other kid-friendly amusements to help patients pass the time, a full-length wavy fun-house-style mirror. I remember thinking briefly that that was really sort of a stupid thing to have in the waiting room of a practice that treats children with eating disorders. Perhaps this ought to have rung a louder warning bell . . .)

After we were called in, two members of the team, the dietician, Barb, and the occupational therapist, Jenifer-with-one-N, introduced themselves, and explained that the pediatric psychologist was unfortunately unavailable that day. Immediately I felt a twinge of disappointment, as I'd been hoping that this visit would include an in-depth psychological evaluation. But, I reasoned, if these people worked with a psychologist on a daily basis, surely they would have picked up enough knowledge of psychology to recognize whether a child's extreme picky eating was just that, or a symptom of a more serious underlying disorder, like, say, Post-Traumatic Feeding Disorder of Infancy, or Sensory Integration Dysfunction (which is something I have worried about with Isaac from time to time since in addition to his food aversion, he has difficulty sleeping and has strange reactions to certain loud noises).

The dietician and the occupational therapist asked us a series of questions about our son.

How long had he been experiencing weight issues and eating problems? Ever since he had surgery at eight months to remove a dermoid cyst on his face that was threatening to enter his brain. We also had to move to a new home that same week. It was a very time stressful for all of us, but especially him.

Did he have any other behavioral issues? Aside from being an extremely poor sleeper since birth, and having an unusually high activity level when awake, no. As a matter of fact, I took care to mention, he is particularly well-behaved for a toddler. He is kind to other children. He helps me with the laundry. He says "please" and "thank you," and even "I'm sorry," sometimes completely spontaneously. He listens a good 80% of the time when I tell him not do do things, often the first time I say no.

Was he or had he ever been developmentally behind? No. He crawled a bit on the late side of normal, and walked a bit on the late side of normal, too, but his language development has always been advanced for his age, and his social development also seems to be normal.

Then they asked us what sorts of things he was openly willing to eat (very few), at what times we offered him food at home (three regular meals and two more flexibly scheduled snacks, extras on the rare occasion he should actually tell us he wanted something), where he usually ate (at a high chair next to the family dining table), and how often we all ate together as a family (ever night at dinner during the week; generally breakfast, lunch and dinner on weekends).

After about half an hour of questioning, they gave us a meal to give Isaac (whom we had been instructed to deliberately starve for several hours before the appointment, so he would definitely be hungry), and went behind a two-way mirror to watch him eat and to watch us interact. Since it was mid-morning, they had included breakfast foods: bacon, eggs, fresh strawberries, a cup of milk, and, bizarrely, some sugar-coated colored cereal resembling Fruit Loops. I remember thinking it was truly odd that a medical team led by a dietician was offering my undernourished son Fruit Loops.

The only things the boy showed any interest in, of course, were the milk and the bacon. He wouldn't go near the cereal, I suppose because of the odd color, and the "slimy" fresh strawberries and "squishy" eggs were definitely out of the question. I did get him to touch the strawberries a few times, only to be rewarded with his trademark look of utter, unbearable disgust. Being as hungry as he was having skipped his regular morning nursing and breakfast, he did eat almost a whole piece of bacon.

Then the Feeding Team members came out and Barb the dietician declared that, since he had shown he could chew and swallow properly, our son had great potential. She noted that our feeding technique struck just the right balance, offering encouragement without being pushy or overly attentive. Our son's problem, she assured us, was clearly behavioral.

She went on to explain that our son was simply using food to undermine the family power structure, and, clearly, had been starving himself for the past nine months solely in order to manipulate us.

Then she handed us a photocopy with a list of feeding guidelines, and explained that in order to treat our son's severe behavioral problem, what we needed to do was to cut all of his "preferred" foods-- including especially his favorite food, dried fruit-- and all nutritional supplements completely out of his diet, always eat with him at precisely scheduled meals, feed him only what we ourselves were eating at every meal, and take away his food when we ourselves were finished eating. If he refused to eat at any meal, he would not be allowed to eat or drink anything except water until the next scheduled snack. If he threw so much as a single piece of pasta or french fry off the table, or started crying loudly because he didn't like the food, or tried to shake his milk out of his sippy cup, we were to scold him severely, immediately take away all of his food, and not allow him to eat or drink anything until the next meal. And, counter to the advice of our gastroenterologist, I should wean him completely as soon as humanly possible.

I was shocked. These people, who had never met my child before, had just spent 45 minutes interviewing us and come to the conclusion that for months he had been starving himself into ill health just because he was onery? And this draconian method was supposedly the only solution?

I was more than mildly pissed off.

I will paraphrase a bit of our further conversation:

"I don't believe 17-month-old children are capable of that type of complex manipulation," I said. "He's been doing this for ages, since he was much too young to have any thought of 'undermining family power structure,'" I said. "Aside from this one issue, and his sleep problems, he is INCREDIBLY WELL-BEHAVED!" I said. "He is severely underweight, which is why we were sent here, and you are asking me to stop giving him nutritional supplements multiple doctors have told us he needs, and to remove healthy food he likes completely from his diet!" I said. "And besides," I added, "this whole thing sounds like it's based on physical punishment, which is completely against my parenting philosophy! You are asking me to withhold food from my child because he doesn't like everything I serve to him, or because he misbehaves the way most toddlers misbehave at the table. You are asking me to try and starve my already underweight child into submission!"

"Actually," replied Barb the dietician cooly, "We prefer to call it appetite manipulation."

Jenifer the occupational therapist, who had largely remained quiet throughout our visit, added cheerfully, "There are plenty of days when my 19-month-old goes to bed without having eaten anything at all."

I wondered if Jenifer's son had starved himself so skinny by skipping dinner that, like Isaac, he was off the pediatric growth chart.

I doubted it.

"It's not really starvation," Barb insisted. "You're offering him nutritious food, and he's choosing not to eat it."

"But that's what I'm already doing," I replied. "I offer him good food, and most of the time, he chooses not to eat it. I'm here to try and get him to eat more, not less. If I only offer him food he doesn't like, he won't eat anything at all. Trust me on this. I know him. He is genuinely afraid of certain kinds of food. "

But both women insisted that after just a few days of this treatment, my son was sure to turn around. Some kids take as much as a week, they said, but then nearly all of them get on board. He might lose a little bit of weight at first, but he was sure to gain all of it back in short order once he started eating a much wider variety of food thanks to the program. They had seen tons of little boys just exactly like mine, they insisted. Same age, same problems. All had gotten better after a short time on the program.

My husband and I left in a bit of a huff, and also very confused about what to do next. I didn't know what to think. After months of struggling for answers, we were desperate to find someone who could help our son. And these were professionals, after all working at one of the best-rated children's hospitals in the country. We had been referred to them by a perfectly competent gastroenterologist. All the information I could find about them indicated that they came highly recommended, that they had years of experience, that they had a very high success rate.

The Cardinal Glennon magazine, published on their website, and other sources I found, spoke of brillant success stories. A boy, for example, hospitalized with a severe vitamin deficiency after a year of insisting on eating only chocolate pudding and french fries-- cured. A girl who had spent the entire first two-and-a-half years of her life on a feeding tube due to surgery as a newborn-- weaned successfully to a plethora of healthy solid foods in a matter of weeks.

At the same time, I knew as surely as I know anything that my son wasn't starving himself on purpose, to manipulate us. Aside from the fact that at 17 months I really didn't believe he possessed the level of sophisiticated reasoning required to launch such a serious, prolonged psychological attack on his parents (let alone that he'd had it at EIGHT months, when the trouble had originally started), that sort of manipulative behavior was not at all characteristic of his personality.

Of course, all toddlers try to test boundaries by pushing their parents' buttons, and my son had proved no exception to that rule, but if anything, outside of his food issues, he was MORE obedient and agreeable than most children his age, not less. (I may be a first-time mother, but I do have experience with other children to compare him to-- a much younger brother and younger cousins who had lived with my family when was a teenager, and the children I took care of during the years I spent working as a part-time nanny).

Besides, I had seen first hand, day in and day out, the genuine fear and disgust on his face when I presented him with certain types of food. He was really, truly terrified of even touching certain kinds of food. The kind of reaction I saw in him daily was not the sort of thing a child his age could fake. I knew it was real.

So, I knew with total certainty that their diagnosis of my son was wrong. Still, I reasoned, even if their methodology is totally off, did that mean their method was entirely wrong? They claimed to have cured so many children with more severe problems than his.

I decided to call the gastroenterologist and explain my concerns to him.

"Try it for a few days," he reasoned. "It does sound counterintuitive, but a few days won't hurt."

So, we tried it for a few days. A few MISERABLE, HORRIBLE, EXHAUSTING, EMOTIONALLY MUTILATING DAYS.

For the first two days, Isaac ate next to nothing. On the third day, he began asking me what I was cooking, at every meal, and then, (learning several new words instantly), began begging me for whatever it was I was making, crying, screaming, throwing himself against the gate to the kitchen until the food was finished. Then, when he sat down, he would put a bite or two in his mouth, smile a sad, game, little smile, and take the food back out of his mouth and politely set it back on his plate, and stare at it forlornly for the rest of the meal.

On the fourth day, he began trying to eat crayons, and paper.

Frantic, I called Barb the dietician. Despite her assurances during our first appointment that we could call her anytime to discuss problems we were having the the program, I quickly discovered that there is no way to actually reach her directly during the day, because her number does not connect to a live person, but a recording that instructs you to call 911 in case of emergency, or otherwise leave a voicemail message for the person of your choice. I was only able to leave a few urgent messages on her voicemail. I then managed to get through to Jenifer the occupational therapist, who seemed sincerely concerned, but she told me that she would not be able to advise me on anything until she spoke to Barb. Finally, at the end of the day, Barb called me.

"You said he would turn completely around by the end of the week," I said. "He's barely eaten or drunk anything in days besides cow's milk; he's hungry and cranky and crying all the time; he's waking up three or four times a night and begging for food, and now, he's started trying to eat things that aren't even edible!"

"Has he done that before?" Barb asked, sounding slightly alarmed.

"NO!"

"This is normal," Barb assured me, after a silent pause, her calm demeanor restored. "He will be better by the end of the week. Just give it a little more time."

Finding no satisfaction with her over the phone, I decided to talk to another sort of expert, a good friend of mine who, as an adult, has a severe phobia of trying new foods, and eats only about 14 things.

"Do you think this will make him hate me forever? Will I just wind up making him worse?" I asked my friend after explaining the program to him.

"No," my friend said. "You should force him to eat new things. The only reason I'm willing to eat peanut butter is because my parents sent me off to camp for a week one summer, and if I hadn't learned to eat something new there, I would have starved."

Then I called the gastroenterologist. He, too, suggested I continue with the program.

So, we gave it a few more days. On the fifth day, I had some encouragement. Isaac tried fresh banana. BANANA! Quite possibly the slimiest food on earth! And he liked it, which is really no surprise, since he's been obsessed with dried banana for months, and as part of the plan, we had cut it completely out of his diet. (He liked the fresh banana, I should say, enough to eat it while starving. But he still winced every time he put it in his mouth). The next day, he tried applesauce, which he had actually eaten with gusto when younger, but had been refusing to go near for months. The next, fresh apples. And later that same evening, he tried a bite or two of apple pie.

Maybe this will work, I began to think. My son is beyond cranky all day, and he is waking up all night, and I know he is really freaked out and scared about all this new food being forced on him all the time and I know he is in physical pain from not eating, and I feel absolutely awful about this whole thing and it doesn't seem right to me at all to be doing it, but maybe it will work, and if I can get him to eat enough food to be healthy, in the long run, all this will be worth it. That is what I thought.

Besides, every single person I asked about it kept telling me to try it for a little longer.

So, we decided to stick with the program. We went in for another appointment with The Feeding Team. The psychologist, mysteriously, still wasn't there. They weighed Isaac. He hadn't gained any weight, but he hadn't lost a significant amount, either. This is when the turnaround happens, they told us. "He's tried four new foods already-- that's fantastic!" they said. He will surely start eating more regularly any day now, the told us and then he will start gaining weight.

During the second and third week on the program, he did not start eating any more new foods. He stopped eating apple pie and apple sauce. And he went day after day, for days at a time, not eating a single bite of dinner.

He continued to wake up multiple times each night, crying piteously for food. He began showing an intense level of separation anxiety regarding me that I had never seen in him before. If his father went in at night to try to comfort him back to sleep, which he had previously been accustomed to and fine with, he would begin screaming "Mommy!" at the top of his lungs, over and over again, crying and gasping for breath, for up to an hour, until I came in the room. My son's father has given him most of his baths since birth, but suddenly, my the boy began screaming in fear every time his dad said the word "bath," and insisted on having me within sight at all times at bathtime. During the day, he attached himself to my hip, crying franticallly every time I got more than 5 feet away from him.

Mind you, my son sees me ALL DAY LONG. EVERY DAY.

His body was trying to grow during that time, and managed something along the lines of an eighth to a quarter of an inch-- enough to make all of his size 12 month pants noticeably too short. But he didn't gain an ounce; with the upward growth, he lost girth; his now too-short pants began falling off his waist, and his ribs and shoulder blades began to stick out even more clearly through his skin.

In the middle of all this, we had a scare: one morning, Isaac had a severe allergic reaction I hadn't seen before. His face swelled up, and his cheeks broke out in hives. We had given him less than a teaspoon of peanut butter for the first time two hours earlier that morning. I was terrified that he might have developed a peanut allergy. We couldn't get in to see an allergist for four days. In the meantime, our family doctor got us an Epi-Pen, and I called The Feeding Team to tell them we might have to modify the program until we could find out what my son was allergic to.

Barb the dietician, when I finally was able to reach her, asked me why I thought I needed to change things just because of an allergy.

I explained that both our family doctor and the allergist we were waiting to see had told us to avoid every food that might possibly contain or have come in contact with peanuts until we could see the allergist, and that we needed to stop introducing him to new foods for the time being in case the allergy was to something else, and only feed him things we knew would not cause any reaction.

Barb replied that I should really calm down about this whole thing, as even if he did have a peanut allergy she was sure I would be able to find a "comfort level" with it eventually, and that really it would probably be safe to go ahead and feed him foods containing peanut oil before we saw the allergist, because most people with peanut allergies are just allergic to peanut protein, and not all peanut oil has protein in it.

I told her I was not going to try any new foods or anything with peanuts in it until we saw an allergist, and hung up the phone, indignant. Who was she to contradict our family doctor and an allergist?

But still, avoiding peanuts, we stuck to the program as best we could; a few days later, we got in to see an allergist and found out, thankfully, that our son was not allergic to peanuts, and had probably reacted to a household cleaner, so we were able to proceed as before.

We went in to see The Feeding Team for yet again (still no psychologist). I told them of my son's lack of progress after three weeks on their program. They were nonchalant.

"It takes some kids a month to catch on," Barb assured us. "He'll get there. Besides, he's still not losing any weight."

[You may recall that at our first meeting, they had told us most kids only take a week, not a month, to turn around on this program].

"But he's not gaining any weight," I countered. "He is already severely underweight for his age. Our family doctor is very concerned about it. That's why we brought him here. He needs to gain weight. When we brought him here, we had finally gotten him gaining again, just not enough. Now his weight has completely flatlined. What does it matter if he eats a slightly wider variety of food if he's still not eating enough? His height has already dropped from the 90th to the 25th percentile in the past few months. His weight problem is stunting his growth."

At that point, Barb insisted to us that she really thought the height thing could really just be a natural correction toward our son's destined final height, since, after all, my husband and I aren't all that large.

My husband is six feet tall.

And I myself am no shrinking violet at 5'7", two inches above the national average for women.

We're both well above the 25th percentile for height, and always have been. Since birth. As we had noted on the family history we filled out before joining the program.

I gave her a look.

"Maybe you should start allowing some of his preferred foods back into his diet for a while, " she then suggested, rather lamely.

It was at this point that I came to a realization: Barb the dietician did not care whether my son gained weight. Barb the dietician did not care whether my son started growing again at a normal rate, and caught back up to his growth curve. Barb the dietician did not care whether my son was physically miserable because he wasn't eating enough to sustain himself; she didn't care if I was stressed out about it; she didn't care if our entire family life was falling apart because of our attempt to stick to her extreme set of recommendations.

All that Barb the dietician cared about, at the end of the day, was promoting her stupid program.

And if it failed with my son, and we dropped out, I realized, all she had to do was say we hadn't followed it properly, and voila: no blemish on her oft-reported "stellar" success record.

But did I get up and run out of the office right then? I am ashamed to say, no. After all, I was desperate. It had taken us months to get a referral to these specialists, and I knew for a fact this was the only group in town who regularly took pediatric feeding disorder cases, because for the past week, in my frustration with The Feeding Team, I had called around to multiple different pediatric doctors and hospitals trying to get information on someone else who might help us, and everyone I'd spoken with said that they were sorry but they couldn't touch psych-related Failure to Thrive with a ten foot pole, and then cheerfully suggested I see The Feeding Team at Cardinal Glennon.

So, I didn't run from the office and slam the door behind me. Instead, I told Barb and Jenifer that I wanted to see the psychologist.

It was at that point that we were informed that the reason we had never seen The Feeding Team's psychologist was that our insurance wouldn't cover her, as this much-touted "expert" on child feeding issues had been in practice for less than five years.

Jenifer (who, despite her seeming utter deference to Barb and her initial unsettling comment about how often she forced her son to skip dinner, I actually do sort of like, because she does seem to genuinely care about my son) then offered to run a Sensory Integration survey test on Isaac.

Why it did not occur to anyone to do this in the first place given his clear texture aversion symptoms, I have NO IDEA.

The only catch was, we would have to come in to see them one more time to drop off the Sensory Survey.

So, we filled out the survey, and dropped it off at our next appointment (delayed for a week, of course, due to the aforementioned family illness), where I basically told them I had no interest in continuing to pay for their advice if they could tell me anything that would actually help my child.

I have no idea whether or not to trust whatever results we get back from that survey.

But, in the meantime, we have completely stopped following The Starvation Team's feeding program. We have gone back to our old scheduled-flexible way of eating, feeding Isaac when he's hungry, whether or not he misbehaved at the last meal. We've gone back to gently encouraging him to expand his diet instead of demanding, giving him lots of things he likes to eat, alongside new things and foods he's been offered many times but never touched. I have started nursing Isaac occasionally again, although after coming so near to complete weaning, I have almost no milk left.

In short, we are slowly trying to regain our son's trust when it comes to food. He is still really cranky a lot of the time, and he's still waking up at night, and he's still crazy-clingy, and lately he's refusing to eat couple of things he used to be relatively okay with, before he went a month without eating them because we'd been advised to cut them out.

But he is very, very happy that his dried apples and bananas are back.

*sigh*

2 comments:

Nancy said...

This post came up as new on my Google Reader feed for some reason. Wow, Jaelithe -- how much you all have been through. I can't imagine how frustrating it must have been, especially when you wanted so much to do the right thing for Isaac and were getting so much not-so-stellar advice. I hope things are more on track now.

Anonymous said...

I am at a loss after reading this. Have a 24 month old boy with EXACTLY the same problems. He has been diagnosed with sensory processing disorder and is also almost below the charts for weight now. He height had always been between the 50th and 75th percentile but has dropped between the 25th and 50th. The advice of his occupational therapist who has treated him for the sensory disorder (and no, he is not autistic)is to take him off of the Pediasure cold turkey. He BARELY eats anything and truly does try. Sits with us at meals just like you wrote and we offer a wide variety of foods and sauces. When he does try to eat, he usually just chews and chews and then spits it out. Am at my wit's end because I am so afraid to take him off the Pediasure since this is really his only nourishment AND since all of his ribs are sticking out now. He looks just awful. Am TERRIFIED now that I have read your comments of how poorly this went with your son--the starvation week. My son needs to learn how to eat though and they say that this "tough love" approach is the only way to get him there but my husband and I are very apprehensive because like you, we feel that they do not know him as well as we do. I'm also worried about why he has no appetite? He is VERY active and if he was just choosing the Pediasure because it is easy for him vs. eating, you would then think he would take at least 8 oz after playing outside vigorously for 4 hours and refusing all snacks and drinks. He doesn't. At the most, he will take mayb 4 ounces and sometimes not even that. I would love it if you could let me know how things are going now and if anything has improved. Very upset about this and feel like there is nothing left we can do for him aside from a feeding tube which I am not about to do yet. BTW, he was also checked out by a GI doctor and they found no problems physically. A feeding team watched him eat and said he is swallowing fine. Hope your situation has improved.