I was thinking about blogging this afternoon about PJ's therapy, when I realized I'd never blogged about what was putting her in therapy in the first place! Some of you may remember how slow PJ has been to start solids. We didn't try to introduce them until she was 11 months old because she has some food allergies, and studies have shown that waiting until they're closer to a year gives the gut time to close and makes preexisting allergies less severe, and can prohibit the forming of new allergies as well. Well, by 14 months she was STILL not at all interested in food. Paper, toys, fingers, pretty much anything else went straight into her mouth without any thought, but food? Not so much.
Once we moved out here, I contacted someone at the Early Childhood Intervention office to get some advice. They gave me the names of two feeding clinics in Denver, both of which had no openings until the fall. I made an appointment at the STAR (Sensory Therapies And Research) Center for September 16, and in the interim continued to encourage PJ to eat whatever she showed an interest in. By September, she was up to Cheerios, goldfish, crackers, mac and cheese, and bread--but that was it, and in extremely small amounts. You could give her an entire box of Cheerios, but she'd still only eat 4 or 5. Given the types of foods she *was* willing to try, I started to suspect a sensory issue. Soft foods, purees chewy foods (with the exception of mac and cheese, go figure), and things like that she refused to even try. But crunchy foods she seemed to love.
On September 16 I took PJ to the STAR center for a two hour evaluation. While there, she was observed by a psychologist, pediatrician, physical therapist, occupational therapist, nutritionist, and speech therapist. They watched her play, watched her walk, and most importantly, watched her eat. She charmed the pants off every one--no surprise!--and showed her true colors during the snack time, refusing to try the apple sauce or dried fruit but happly sampling all the crunchy items they offered.
After the eval, I took her home, put her down for a nap, had some lunch, then went back for the 2.5 hour debrief with Dr. Toomey, the psychologist and head of the STAR team. Their conclusions:
1. PJ has low normal muscle tone. She fakes her strength by locking her joints, which explains her loping walk, but which will ruin her joints in the long run if she's not taught NOT to do it. The low muscle tone extends to her mouth, where her tongue is both not strong enough to move properly and also simply doesn't know how to move properly to move food within the mouth, ball it up after chewing, and get it down her throat. Speaking of chewing...
2. She doesn't know how. She grinds her lower jaw forward and back, rather than in the rotary fashion that people normally use to eat. Another issue that muddies the waters is that...
3. PJ is an "under-responder" to certain kinds of sensory input. Her sight and hearing are just fine, however, she experiences with less intensity stimuli that engages her sense of taste, touch, and smell. While at the eval, Dr. Toomey passed a vile of very strong peppermint under PJ's nose, and she acted like it wasn't even there. She didn't seem to differentiate between a garlic chip or a tart apple-cinnamon one. This explains her frequent choking as well--she "loses" food in her mouth because she can't feel it as well, and when the food accidentally makes its way to the back of her throat, it's a total surprise.
(Another issue they suspect, which doesn't have any bearing on her eating, is renal tubular acidosis. Her height and weight both dropped off from the 85-99% to the 25-50%, between her 12 month and 18 month measurements. Insufficient caloric intake affects weight first, and then height, so if this drop had been because she was only nursing and not eating, then they wouldn't both be in the same percentage range anymore. Apparently this issue self-corrects in the majority of kids around age 3, and there is medication they can take until the body can do it itself--we've got an appointment with our new ped coming up and she'll take a blood test to determine if PJ has RTA or not. I have no idea what happens if it doesn't self-correct--I didn't think to ask, and I don't want to Google it for fear of what I might find.)
So, what does this all mean? According to the STAR team, about 6-10 months of weekly therapy to help her learn how to chew properly, as well as working on her core strength and willingness to try foods of certain textures. Our first steps have been to adjust her high chair so that her hips, knees, and ankles are all set at 90 degrees when she eats; her core strength is so poor that sitting in a high chair is difficult and uncomfortable, and her focus is taken from trying to eat because she's trying to just stay upright. The 90/90/90 should help her be more comfortable, so we've got a ghetto rig of boxes and phone books for her feet to rest on so everything bends properly. Another priority has been to get her attached to some kind of "lovie" so that she has something to go to as we start to cut down on breastfeeding. With all the nursing, she's rarely hungry enough to care about solids, and obviously that needs to change. We've managed to get her interested in a little doll she got for Christmas last year, though it's not something she turns to yet for comfort. They said it would take 2-3 weeks, though, and we're just now finishing week 1, so we've got some time.
We'll also be putting her on a more rigid feeding schedule, the outcome of which (i.e. no more nursing every five minutes) I'm greatly anticipating, but the implementation of which I am not at all looking forward to. A detailed mealtime routine which we'll follow at all meals and snacks will come next, as well as daily muscle-strengthening exercises. And of course the therapy.
I'm really interested to see what the therapy is like. There are some things that just don't make sense to me--like how she could have low muscle tone and a supposedly weak core, but still be able to fling her legs over her head when she's lying on her back, or how she can pick up things that are seriously heavy when you're her size. And what about this whole "under-responding" thing--is that something you can change, or is it just something she'll have to deal with for the rest of her life? The folks on the STAR team are really fantastic, and I know they'll be willing to sit and hash out all our questions and struggles and frustrations as we embark on this new experience.
So there you go--there's the big update. I'll write more this afternoon or evening to report on how the therapy went. Wish us luck!
