Some background, and why I'm writing this down.

I'm writing this stuff down for the benefit of family members who want to hear about Susan's health, and for other parents of kids with feeding disorders who are curious about Dr. Paul Hyman's treatment protocol. There is not a lot of information available about feeding issues, so word-of-mouth is pretty much the only way to find out what treatments are even out there. Anyway, if you're offended by foul language or discussion of bodily functions, then, you know, you can go read something else. The Drudge Report, maybe. Or catch last night's Daily Show on Hulu. Whatever. I don't expect casual acquaintances to be that interested in the minutia of my kid's medical issues.

If you're wondering what those issues are, well... it's complicated. I put together a flow chart a while back, mostly trying to get my own head around it all. She was premature and she has a chromosomal anomaly and she has a feeding disorder and is diagnosed on the autism spectrum. These things are are interrelated and, I believe, stem from something that happened in the first trimester of my pregnancy with her. We don't know what exactly happened, maybe I caught a virus or something, but it was significant enough that from that point on some of her cells developed with a genetic marker that neither her father nor I carry. This genetic mutation, an extra piece of chromosome 9 that appears in just some of her cells, is so rare that there's no identified "syndrome" that is associated with it. We don't know what it means, but we can assume that any developmental problems she has is related to that mutation. Genetics is vastly complicated and only beginning to be understood by people who are a lot smarter than me, but from what I have learned, whenever something starts going wrong with the genes, things go very wrong very fast. The fact that Susan has only moderate developmental problems despite her genetic condition is remarkably lucky.



I have a hard time explaining her feeding issues without going into long background explanations. It's not exactly that she cannot eat, at least in the physical sense. She has the right physiology, there's no paralysis or anything like that. Most of the time if I say "feeding tube" to somebody, they obviously start thinking about Terry Schiavo and permanent vegetative states and end of life issues. That's totally not where Susan is medically - she's basically healthy and as active as any kid.

On the other hand, if I don't mention the tube and just say Susan has "feeding issues," people generally react as though she's just a picky eater. Seriously, if I had a dollar for every time somebody told me that she'd eat if she just got hungry enough, I could pay for a year's worth of Pediasure. (It's kind of like saying somebody in a coma will wake up once they've gotten enough sleep.) She is not being willful in refusing food. She would love to be able to eat the same foods the other kids at school do. Nor is she holding out for something that tastes better. I would gladly let her eat ice cream three times a day if she could manage it.

You know how if one thing in your house is broken, other stuff starts to fall apart too before you can fix it all? Like how a single leaky pipe will let water drip under the floorboards so the wood beams start to rot and a termite colony moves in? (Hasn't that happened to everybody? It can't be just me.) Well, Susan was born too small to have the strength and stamina to nurse or drink a bottle on her own. She might have grown out of that, but she also needed a bunch of scary medical interventions like respirators and feeding tubes that went down her throat. At a time when most babies only associate happy, comfortable thoughts with their mouths (Yum! Mom! Milk! Binky!) Susan was instead experiencing all sorts of freaky and uncomfortable, if not downright painful, things going through her mouth and esophagus. She became guarded about any oral stimulation.

Over her first year, she was pretty constantly sick because we couldn't figure out how to keep her from throwing up all the food we gave her. She had to have been hungry all the time because we couldn't keep anything in her, and she must have had an upset stomach and sore muscles from all the vomiting. She threw up so much that after a while she wouldn't even attempt to take a bottle on her own (orally, that is). She lost the weak feeding skills she had at birth, and developed a fierce aversion to anything in her mouth aside from a single pacifier that she could not do without.

Eventually we got the vomiting under control, and her health improved, but the damage was done developmentally. She missed the window of time during which babies learn to eat and develop the muscle coordination to chew, swallow solids, and speak clearly. Although these skills are unconscious in most people, there are actually a lot of complicated muscle movements involved and it's not intuitive if you don't have the reflex. For example, can you imagine how to explain to somebody how to swallow? There's no vocabulary for how to do it. (Well, I'm sure there is medically, but not in common speech.) Teaching this kind of skill takes a whole lot of therapy and practice. So that's what we've been doing for the last five years.

Some of her behavioral quirks are consistent with some behavior associated with the autism spectrum. What that means is that in some ways, she acts like an autistic kid, but in other ways, she does not. Autism is also still mostly a mystery to scientists, and there is a huge range of behaviors and severity of the condition among people diagnosed with autism. That's why it is more correctly referred to as "Autism Spectrum Disorder," since there is a whole spectrum of conditions that are affiliated with the diagnosis.

Susan's developmental psychiatrist identifies Susan as being on the autism spectrum. Her geneticist disagrees, because he believes her delays are caused by the genetic anomaly, not by autism. Tomay-to, tomah-to, as far as I'm concerned. Although she does not demonstrate a lot of the classic autism behaviors that people expect from someone on the spectrum - she's quite friendly and affectionate - she does handle social interactions differently than most people. The diagnosis is useful because 1) there are a lot of people working with autistic kids and we can learn useful strategies from them, and 2) the state requires private insurers to cover behavioral therapy for autistic kids, so we'll have access to treatments that otherwise we could not afford.

I'm still working on an update about her recovery from the J-tube placement and how the first two weeks of the feeding protocol have gone. I'll post it when I'm ready.

Feeding Tube 411

It seems I properly freaked out my family by describing the feeding tube switchout as a surgical procedure without warning everyone in advance. Sorry about that. To be clear, it wasn't really an operation. At least far as I am concerned, if there are no incisions and no stitches, there was no surgery. What Susan had done last week was the replacement of her old feeding tube, which went into her stomach, with a different kind that goes into her small intestine. They use the same port as the old tube, so didn't need to cut any new holes, but they had to run a camera down her throat so they could see what they were doing. That required general anesthesia, since no five-year-old would calmly cooperate with a tube going down her throat.

To put it in a nutshell, Susan has had a feeding tube (a gastric or g-tube) since she was five months old, because having been born severely premature she never developed the stamina and coordination to eat enough on her own. The g-tube allowed us to pump food directly into her stomach, much like putting gas in a car. It was medically necessary, and it kept her alive, but the g-tube has the side effect of completely screwing with normal hunger instincts. There's a bunch of other medical stuff involved with Susan's inability to eat normally, and I might talk about all that some other time, but right now for the sake of simplicity let's just say that she has had to work hard to learn to eat normally.

Her new gastroenterologist (which, for reasons unknown to me, is abbreviated "G.I.") treats children's feeding disorders with a multidisciplinary approach that uses medication to relieve physical discomfort these kids experience when eating, along with speech, occupational, and behavioral therapy focused on oral-motor coordination and feeding skills. Susan has been getting therapy for years, and has made a lot of progress, but is no where near eating enough to get rid of the tube.

This protocol we've just started will hopefully help Susan make a leap forward in independent eating. The first step was switching to the jeujunal feeding tube (J-tube) that still allows us to pump food into her, but places it into the small intestine instead of the stomach, so it doesn't mess with her ability to experience hunger. The other advantage of the J-tube is that since she doesn't hold the tube feedings in her stomach, she can't vomit them up. For a kid who spent a year of her life vomiting after EVERY feeding and sometimes just for the hell of it, having the food we give her stay in there is a HUGE deal.

So I'm like, why didn't anybody tell us about this tube five years ago, when I was seeing doctor after doctor and begging for help? It beats the hell out of me. She was really sick for a long time, and we very nearly had a major surgical procedure done that would have made her permanently unable to vomit (before I discovered on my own a formula that she could tolerate, but that's an old rant.) If we could have avoided all of that sickness in the first place, her feeding problems would not have become so entrenched, and she'd probably be a lot healthier and less developmentally delayed today. Well, fuck. There's nothing to do about that now. I guess we're just lucky that a specialist in this field has finally moved to this area.

Thursday night she slept like a rock and had no complications at all with using the new tube for the first time. The doctor has us giving her four bottles of Pediasure a night, each of which is about as expensive as a gram of cocaine. If we get it all into her overnight, that meets her nutritional needs for the day, so she is on her own to eat whatever she wants to eat to satisfy hunger. Friday morning she woke up happy, ate a few bites of applesauce for breakfast, and followed her usual routine of being sweet and charming until it was time to leave for school, at which point she tried to beat the crap out of me. I've learned that if I carry her under my arm like a sack of potatoes, her little fists can't reach my face, and by the time I get her to the car she usually has switched from screaming to giggling so it's all okay.

Day one, con't

S actually asked for (and received of course), scrambled eggs for dinner. Scrambled-motherfucking-eggs, do you hear me? They have a squishy texture that usually she can't stand. I'm finding it an effort to NOT encourage/remind her to keep eating. I kept my comments limited to complementing her on doing a good job, though, and she fed herself about 10 bites of eggs, and five more of pudding. Of course, she pocketed most of the eggs in her cheeks like a squirrel, and eventually gagged and threw up. Still, the interest in eating was terrific - we can keep working on the skills to handle textures.

She also drank about three ounces of lemonade over the course of the evening with no prompting from me.


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J-Tube Placement and Day One of new feeding protocol

We had to be at the hospital by 7:00 a.m. to check Susan in for the procedure. It was done in the short-stay surgery unit, so after we arrived and filled out the requisite forms, Susan was assigned to a semi-private (two bed) room to be seen by the assorted medical staff to get her ready for anesthesia. They gave her a tranquilizer (Versed) via her g-tube so she wouldn't freak out when they put in the I.V. After a few minutes, she was happily stoned and watching cartoons from the hospital bed. John and I hung out with her the entire time, handing her crayons to fill in the hospital coloring book (color your organs!), and signing more forms. Around 10:00, they took her in a wheelchair to the procedure room, which was about the size of a large closet.

We stayed until the anesthesiologist had given her some nitrous oxide and she fell asleep. They put the I.V.'s in after she was out, so mercifully neither she nor I had to watch them find a vein on the bank of her hand. The procedure itself took about an hour, during which time I sat in the surgery waiting room and crocheted. The surgery waiting room in Children's Hospital is not a happy place. Fortunately, I wasn't there long. A nurse came to get me once the procedure was done and Susan was waking up.

We were taken back to her room to wait while the sedation wore off so we could go home. She had to drink four ounces of water and keep it down before she could be released. She didn't have any trouble keeping it down, but she only drinks in tiny sips, so it took a while to get four ounces of water into her. They finally cut her loose at about 2:00. She had not had anything to eat or drink since midnight, aside from the four ounces of water, so she was hungry and pissed off. She yelled the whole time I was carrying her out - awkwardly, as she's getting pretty tall these days - and sat down in the middle of the sidewalk in front of the main doors to the hospital, still dressed in her monkey jammies, where she announced, "I want to stay here." She has totally got the passive resistance thing DOWN. Frankly, I'm surprised security didn't come out to check my I.D. and make sure I wasn't hauling off somebody else's screaming kid.

Once I got her home, she was quite happy to be set up in my bed with some soft pillows and cartoons on the t.v. She seemed to feel fine, albeit a little sleepy. I was worried that the wild screaming behavior was going to go on for a while, but she actually settled in pretty well. She asked for some juice, and sipped on that for a while, but only got a couple of tablespoons of liquid since the lid on the sippy cup I gave her only drips a few drops at a time.

The big question, of course, is how she is going to do eating on her own from 7:30 a.m. to 7:30 p.m. every day. Part of this feeding protocol is that for eight weeks, she is under no pressure to eat if she doesn't want to. During this time her body is healing from the discomfort of years of medical interventions through her esophagus and stomach, and behaviorally we are all on vacation from trying to make her eat. I can offer her food, but I can't spoon-feed her or insist that she eat anything.

She's been doing pretty well with eating during the day for a few months, but we always have to spoon-feed her and insist that she finish her portion of food. I'm not sure how much she's going to eat if it's totally up to her. Lately, anytime we feed her, whoever is doing the feeding has to hold tightly onto the bowl of food or she will grab it and throw it on the floor. Same with drinks, or anything we are trying to eat ourselves. This does not make for peaceful family mealtimes, and dinner together out of the house is out of the question. I talked yesterday with the behavioral specialist who leads Susan's social skills playgroup about arranging some focused therapy just to deal with behavior at mealtimes.

So with all that said, this afternoon she has been calmly drinking lemonade through a straw, and ate about a third of a pudding cup by herself with no prodding from me. She actually brought the pudding cup to me and asked me to open it, then set it down on the table when she was done, without throwing it on the floor. I'm skeptical that she'll remain this cooperative once all the sedatives have fully left her system, but it's nice to have an early encouraging sign. I've got to figure out what I can tempt her with for dinner. Maybe I'll just let her have the rest of the pudding cup. Naturally we want her to eat a variety of healthy foods, but while we're on vacation from feeding-related stress, the important thing is just to let her have foods she likes.