Tuesday, March 24, 2015

Feeding School Days

Tomato Soup Fish!
We're starting week 4 of "feeding school" now.  It's been an adventure, that's for sure.  There have been some ups and some downs.

Because Secora was sick and had stopped eating again shortly before she came here, we were basically starting at square one when we arrived.  The first two weeks were just getting her back up to the calorie and fluid intake levels she needed.  She's hydrated now and meeting her weight gain goals.  The third week was focused on getting her to eat foods she used to eat regularly but had dropped since the last hospitalization.  Week 4 is starting out the same, but we should be trying new foods soon.  This is also the week I start feeding her during clinic meal times with the psychologist looking on to make sure I'm implementing the program the right way.  That's gone fine so far and I don't anticipate problems there.  A lot of the kids here do worse with their parents because they've learned certain behaviors to push buttons, but I don't think that's what she's doing or is going to try to do.  Of course, time will tell, I probably just jinxed myself.

A big frustration has been simply dealing with her anxiety over everything.  We had a lot of trouble at first just getting her to go into the therapy sessions and trusting that the rules are the rules, we aren't going to be changing everything up on her.  OT sessions got hard as she was asked to smell and touch foods she didn't want to deal with and for a while she was really worried she was going to be forced to touch or smell a food.  Because that would be completely detrimental to the process, forcing the issue is not how it works.  There is only positive reinforcement and any negative behaviors on her part are completely ignored.  She always has the choice of sitting in the chair and doing absolutely nothing for an hour, and she has chosen to take that route a few times, but it took her a while to trust us not to change that on her.

Our big successes have been eating corn dogs, eggo waffles and vanilla yogurt (in sessions at the clinic, still not in a different setting), which were all staples before she got sick, and finger painting with yogurt and tomato soup.  I don't think it can be discounted that she's also finally made a few friends at the Ronald McDonald House.  It took her a long time, but there is one adult and one teenager in particular that she actually seeks out and wants to talk to now.  There are a couple of kids her age that she will tolerate playing alongside and sometimes she warms up enough to engage in cooperative play with them.   This is pretty big for her and I think contributes to her quality of life here.  She's used to playing with her sisters and the neighbor kids at home and I think she was getting pretty bored just being with me.

I've also learned some new things.  The OT has told me that she's a supertaster, which I didn't even know existed before.  I immediately set out to google and found this short NOVA video that explains the basics.  The Wikipedia article was interesting mainly for the list of foods sometimes avoided by supertasters.  In particular, cheddar cheese is on the list and I spent a lot of time trying to get her to eat cheese and could never get it to "stick".  I'm also learning that her anxiety over food and sensory input in general is more of an issue than I thought.  This can possibly be used in our favor as we get her "stuck" on a new eating routine that includes trying new things and has very clear expectations for every meal.  Always knowing what is coming is going to be better for her than throwing new foods at her randomly.

Day to day life can be really fun and also kind of a drag, just like day to day life at home!  The Ronald McDonald House is such a blessing to have available.  Having a "home" to go back to that is always consistent is good for Secora.  The playrooms and playground are wonderful too.  Being around all the kids, some of whom have very serious medical issues, is good for keeping things in perspective.  Meal time can be challenging.  We have access to fridge and freezer and a personal pantry space, so I'm able to make her food for her easily.  I get three meals a day, which is a huge financial help.  Most of the meals are good, there's been a good balance between home cooked and quick food.  Just when I find myself groaning about yet another group making some sort of casserole and green beans, someone sends pizza or sets up a sandwich bar, so it all balances out.  We stand out as longer term residents now and have made friends with the other families that are there for more than a week or two.  The biggest frustration is that each meal is provided by a different volunteer group, so I find myself facing the comments about her eating at nearly every meal.  There's always someone in the group who is convinced they can talk her into eating something she doesn't want, or is flabbergasted or seemingly offended that she doesn't want their spaghetti.  I get to deal with the "but she looks fine" and "if she can eat chicken nuggets, why can't she eat pasta?" and "but WHY is she on pediasure, what's wrong with her?" comments on a very regular basis.  The staff makes up for it though.  They know her now and they go out of their way to make the food situation as easy as it can be.

For now, we just keep on keepin' on.  I've been a little disappointed with the speed of progress at times, but the therapists still think we are well poised to get her eating new foods soon.  Hopefully that continues and we can go home with a plan to keep her moving forward.






Tuesday, March 10, 2015

What is Intensive Feeding Therapy?

Source  Photo edited with PicMonkey

As Secora gets started with her intensive feeding therapy, I've had a lot of questions about what exactly feeding therapy looks like.  It's easier to understand when you start out knowing what's really happening in her brain.  Eating is not rewarding for Secora.  You have to imagine a food you really don't want to eat---maybe something so spicy it burns your mouth until you're just overwhelmed with the burning sensation in your mouth and the running nose and the watering eyes and the flushing of your face and neck.  Then imagine that's the only food that exists in the world.  You could be starving and you could really want to eat, but still dread doing it.  Maybe if there was something like yogurt that was soothing to your mouth instead, you'd always seek that out even though you were completely sick of it because you'd been eating it every single day.  Maybe one day you discover something else like a smoothie that is also soothing, but you've had so much yogurt, you don't add smoothies to the mix, you just stop eating yogurt completely.

That's about how the last 4 years have gone for us.  Even when we think we've made progress, it's often paired with some sort of regression.  Anything extra that stresses her system puts her right back at square one.  This is a short run down of what things are like from her point of view.   Only the "treatment" options suggested here aren't appropriate for her.  We've tried these things over the last several years and it's gotten us nowhere.  When she started regressing a lot last fall, our speech therapist that had been doing feeding therapy suggested we take her to an intensive feeding therapy program with an integrated approach, so here we are.

When trying to understand what her day is like and what she's doing here, it's also helpful to know what assumptions you might be making that don't apply to Secora.  These are the most common myths we had a little trouble getting away from at first.

"Yes," I hear you thinking, "but what do you DO?" Well, each morning, she spends her first hour with a speech therapist.  This is the person that can look for and treat motor problems--trouble manipulating food in her mouth, swallowing, etc...  She doesn't really have any trouble with that, but speech is always the person that introduces something new to eat to make sure she's physically capable of eating it.  Speech also teaches her the new things she's going to be doing.  For her, it's "eating in a circle".  She will have 3-4 foods and she gets to pick which food is in which position in a divided plate, but then she has to progress step by step through the circle.  So it's a bite of chicken, then a bite of peaches, then a drink of pediasure, or whatever the plate is that day.  When she gets to a new or difficult food, SOS techniques are used, so she might only have to touch it, or maybe taste but then spit out that food.  The choice to do SOS is based on her specific set of issues, other kids might follow a food chaining plan or something else.  The eating in a circle rule is "no skips" and one of her favorite foods is always included so that she has motivation to get past the new thing(s) and get to what she really wants.

Her second hour is spent with an occupational therapist.  This is the person addressing most of the sensory issues, which is the biggest problem for her.  They play games to work on developing core strength because postural stability is key to being able to focus on eating, but they're mostly doing a lot of desensitizing.  For instance, Secora is really sensitive to smells.  If someone eats peanut butter in the same room as her, she's so distressed by the smell, she often won't eat her own food (even if it's a favorite).  So OT works on getting her to tolerate a wider variety of smells.  They also play with messy things because in general, she doesn't like her hands messy.  Very soon, they'll start playing with new foods.  Once she tolerates the new food in the OT room (with no expectation of eating it) it shows up in the speech sessions.

After OT, it's lunch time.  She eats lunch with the psychologist.  This is where she's really expected to eat anything that's offered.  They only have foods that the occupational and speech therapist have decided she's truly capable of eating.  There is a timer set and mealtime is 25 minutes or when the food is gone, whichever comes first.  As long as she's eating, there is a reward going on (for her, for right now, it's stamping and coloring).  If she goes too long without taking a bite, the reward stops.  The psychologist will play alone without including her and remind her to "take a bite" in a neutral tone of voice at regular intervals.  Since you truly cannot MAKE a kid eat, there are no punishments involved, and any negative behavior on her part is completely ignored, while any cooperation is praised.  The timer prevents the meal from going on forever, but also prevents her from getting out of the meal early.  She gets a break after lunch so she can take a short nap, then she goes back for another meal time with the psychologist.

While she's doing her sessions, I'm often meeting with whoever she's not seeing at the moment.  Each person checks in with me after each session to let me know how things went, what they might try next and what I should or shouldn't be doing when she's with me.  This is where I've learned things like her love of oranges being a big plus because it's a strong enough smell that she may be able to tolerate less "friendly" smells better if we have her smell oranges before being exposed to other things.  It's also when I tell them what little quirks I've come up against (like, apparently purple grapes, which have been a safe food for years, are only a breakfast food now and can't be eaten at dinner).  We talk about what we want her to eat too so they don't waste time getting her eating something we don't regularly eat at home.  The dietitian also sits down with me a couple times a week and we go through her food logs.  The dietitian is in charge of weighing her once a week to be sure she's not losing weight and making sure she's getting her nutritional needs met.  The current issue is that Secora's fluid intake has been low ever since she was sick.  I can't get her to drink both pediasure and other fluids, it's one or the other, so we've had to try different ways to balance calories with ounces.  The dietitian also reports back to speech and OT and gives them a short list of foods she's really like to see Secora add, then speech and OT figure out which of those they can actually get her to eat.

Rinse and repeat, that's how it goes Monday through Thursday.  She gets the weekend off.  We're staying at the Ronald McDonald House, so Friday is mostly sleeping in and taking a long nap because she gets exhausted from all the therapy.  She spends some time on the playground or in the play rooms at the house since she doesn't have time to do that the rest of the week.  On the weekend, she still sleeps in a bit, but she's more rested up and ready to play more.

This goes on for at least 5 weeks and time will tell what sort of results we'll get with Secora, but we keep hearing from all different people how amazing the program is and what great results they get, so hopefully it works out that way for us too!

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