Tuesday, January 22, 2008

My little Sisyphus

It is that time again in the 'Tar household. The time where KayTar isn't eating and it drives me to the computer to hammer out my frustrations in words and phrases. The rant? Is long overdue. She hasn't been eating since t he first of the year. Really, she hasn't. I know parents of typical kids think this is a huge exaggeration, but with KayTar, it isn't. I don't mean she hasn't eaten ANYTHING in 22 days, I mean she's eaten veeeeeeeeeery little in that time. Let me give you four sample days, for your perusal.

Day One:
1 Yumsters yogurt (100 calories/5g protein)

Day Two:

apples and chicken stage 2 jar food (70 calories/1g protein)
green beans stage 2 jar food (30 calories/1g protein)

Day Three:

Not.A.Thing (0 calories/0g protein)

Day Four:

sweet potatoes and chicken stage 2 jar food (80 calories/2g protein)

These are ENTIRE DAYS worth of what she is eating. DAYS. Some of you have very little babies who are eating more than KayTar on a daily basis. Some of those babies eat more than KayTar's daily intake in a SINGLE MEAL. I don't think she has eaten more than two jars (or one jar and one yogurt) in a day once since the start of the year. I know I've said this before, but if it were not for her bottle, can you imagine the shape she would be in? She is almost three and she eats enough for a 6 month old.

I don't know what happened exactly. She was doing well, eating quite a bit of table food (not healthy stuff, but progress nonetheless), then she had an episode, we went out of town, and she got sick. Boom, boom, boom. We always see regression with episodes in the food arena, we expect it, really. But it has been 21 days since the episode and still she is eating like a bird, less than a bird, really, because I think they eat on a daily basis. She stops eating in new environments, like when we were out of town. The first three days she ate nothing but a single yogurt on the third day. And when she is sick, she almost always gets borderline dehydrated, because her refusals are so entirely dedicated. There are three very solid reasons for this regression. I know, I know, I know, we always gain back the ground...it is just, I'm starting to worry is all. It is wearing on me.

The problem is not purely sensory-based, because these are SAFE foods, foods she trusts that are being denied. I mean, I sit her down to attempt to eat and she's screaming and thrashing and sobbing. I try and calm her down, talk her through it, distract her by having her read me the label, distract her by asking her to take and count bites, sometimes, rarely, something works and I can get her to eat a little. More often than not, I can't. I cave. I let her walk away. The alternative is worse, I don't want to make food a battle (more so than it naturally is for her). Josh gets home and says, "What did she eat today?" and I say, "Nothing." most days, in the eight hours he is gone, I usually cannot get her to eat ANYTHING. He will sit her down in the evening and try again. If she eats, this is usually when she does it, but it is rarely smooth sailing, it usually begins with the screaming and flailing and refusal, but sometimes, just having Daddy's face at the other end of the spoon works a little magic and she'll eat a jar....4 oz. 4 hard won ounces of food. Evening has always been her calm time, the time she is more willing to accept things. Breakfast is nearly impossible, even during good times she isn't too keen on morning food. Lunch is hit or miss. Dinner is the most reliable meal but even so, it isn't a sure thing.

A couple months ago, she was ASKING me for food. She would willingly pick a jar and go to her eating spot. Sometimes she might even say "MORE!" after we were done. Now, I say, "KayTar, are you ready to eat?" and she says, "Noooohohoho, I just PLAYIN, Mommy. No eating." which quickly dissolves into a sobbing, screaming mess if I happen to push the envelope any farther. I feel like I am doing her a disservice by not being able to convince her eating is a GOOD idea, but I know that pushing it any further will only compound the problem. But it feels careless, letting her effectively starve herself, you know? Shouldn't I be able to feed my child? Isn't it a tenet of parenthood? Anyone can feed a child. Anyone. But I can't, I can't get my nearly three year old to eat more than an infant.

She's back on Pediasure. Between the Pediasure and milk, she is hitting, roughly, 600 calories or so. It isn't her goal range, 900-1000, but it is something. At her check up next month, I suppose we'll see if any damage is being done to that weight we fought so hard to get back on her little body. I'm tracking her intake again. We're back there. I know we've been here before and things tend to move along at some point, but it is hard, walking these same circles over and over. Is she ever going to gain ground on this? Or is every step forward always going to be part of an endless loop of regression? Are we meant to push this boulder forever? Will we ever reach the top of the hill?

I remember when we initially saw her feeding disorder specialist, she told us the goal was to have KayTar eating normally by Kindergarten. At the time I was floored. FLOORED. Kindergarten? She might as well have said college. It was so distant and we smugly thought, "Surely she will be eating before KINDERGARTEN. How ridiculous!" But now? It seems too close. I actually have doubts than any sort of normal eating routine can be accomplished in the next two years. We've been at this nearly two years already, and here we are, my Excel spreadsheet looking exactly the same as it did last year.


anon said...

I keep writing to you about boosting the calories of those little jars. Have you tried that?

I know your frustration we've been through that too. Sickness always causes food eating regression.

In fact we currently have the high calories diet in place and manage to turn those 70 to 80 calories into 200 with the aide of melted soy cheese and olive oil.

Remember to look at the big picture. Her ups are much higher than they used to be.

A lot can happen in two years.

Kristin said...

I don't even know what Sisyphus means. But I'm sorry she's back to this.

I do believe you. I know you're not exaggerating. It is so hard to watch your kid essentially starve themselves.

I don't want you to have to worry like this. You've got enough on your plate. Ha! Plate! On a post about food issues.

Sorry, not that funny. You had to be there. :)

Julie Pippert said...

Oh Kyla, I'm so, so sorry. Food is so basic, the bottom line thing we feel compelled to provide for our children for their health. She is denying and you are being denied and it has to be so rough.

You must indeed feel like Sisyphus. I'm so sorry.

What does the expert say?

I know kids so easily associate food with power and/or pain when they have problems. Does she believe food is responsible for making her feel sick or get sick?

I don't know how else to phrase this because it's how the doctor explained it to us, but kids are wicked superstitious, you know? They look for reason, concrete reason, for bad things, something they can control.

Does that ever apply to KayTar? With food, I mean?

Here's hoping you overcome the obstacle, whatever it is. I 100% believe you, of course, and know it's so tough for you.

Anonymous said...

Oh dear. I sooo understand this problem. I have no solutions as Bug was tubed. Our problem stemmed from trying to get him off the tube...but he wouldn't/couldn't eat.

There is no danger of her being tubed is there?

Jenny, the Bloggess said...

F*cking Sisyphus. I hate that guy and all he represents.

Well, if it makes you feel any better, she looks perfectly fine...not too thin at all.

Hailey goes days sometimes without eating but I know it's not the same since she has days when she eats everything in the house.

I wish it weren't so damned complicated for you guys.

Becca said...

I am so so sorry! I can sense your frustration. I can't imagine.

S said...

Damn, Kyla. That would be so incredibly hard for me, as a parent, too.

I'm really sorry. I was thinking along Julie's lines -- maybe she associates food with throwing up, and throwing up frightens her, so she wants to avoid food?

Janet said...

So many parents complain about their kids not eating 'properly' (including me). Then I read this post and I think we have no idea about feeding challenges. None.

I'm sorry it's going so poorly. I hope you get the damn boulder to stay on top of the hill, soon.

Aliki2006 said...

I am so so sorry about this frustrating and anxious patch you're in. I think it's got to be one of the most frustrating things--watching your kid just.not.eat.

Katie said...

Oh, Kaytar. This is not the direction we were hoping to head. I know you worry because you want her weight to remain stable, healthy. I'm sorry, I don't really have any advice, just praying the desire to eat will return before it affects her growth.

Mad said...

Oh Kyla,
Of all this issues with Kay-Tar, this one must give you the most fear and anxiety. We're mothers, right? We want to feed out children and make them plump.

amanda said...

maybe a little karo syrup in her bottle? We tried that for my fairy god daughter when her allergies, texture issues, and PDD kept her from eating. It worked, for us,because it didn't change the consistency of her bottle. I am sorry you are going through this- I cried just trying to get Sof to eat.

motherbumper said...

Damn you Sisyphus (*shakes fist in air*) two steps forward, one step back. I'm sorry for this added frustration and I really hope that the kindergarten can be achieved - as impossible as it seems today.

ewe are here said...

I had no idea that 'no food' really meant 'No.Food.Period.' Wow.

I'm so sorry this is such a struggle? Perhaps another children's eating disorder expert...?

Girlplustwo said...

i don't have any advice as this would drive me bleeping mad.

dawn224 said...

She really *does* look healthy.

I had success (?) with one of my clients who would take TINY bites of food. And when I say TINY I really mean bites about the size of the word TINY right here. She's been tubed for ... well long enough that she'd never eaten solids (so this is more like what RM referred to with Bug, trying to get her off the tube)...

anyway... she was a competitive sort and the day she ate the most was the day I was all off handed and like 'hey see how big of a bite I can take' and then took something about the size of TINYTINY so it looked like something she could do - and she did.

She, like the little 'Tar was also into the spicy, strong flavored food.

Do you need to do a blog post on getting more of those nipples in stock?

~aj~ said...

Oh man, I had no idea it had gotten to "that point" again with KayTar's eating. I just can't imagine the frustration. It's just impossible for me to fathom NOT wanting to eat for days on end. I just wish there was some way to get into KayTar's head and figure out why she's not hungry (or at least why she thinks she's not hungry).

((HUGS)) to you Kyla. I know this has to be so hard.

Anonymous said...

Kyla, I looked for an email addy to privately email you. I am a wealth of information when it comes to medical mysteries. I have worked in the medical field and also had a special needs child myself. Please email me if you have a moment at Tamm06@aol.com
You can visit my website at www.caringbridge.org/oh/skyecoleycole I have LOTS of ideas to share with you, in the meantime, your and sweet Kaytar are in my prayers!

Anonymous said...

This has got to be so scary, I can't even imagine. Thinking of you and Kaytar.

Anonymous said...

Oh, Kyla. I always wish I had something meaningful or helpful to say. I just hope that KayTar goes back to her food.

flutter said...

Oh, baby girl. Mama and little girl...

Family Adventure said...

I'm sorry, Kyla. Do you remember how long it took after the last episode before she starting eating mroe again? Is it taking longer this time??


Kim said...

I am sorry you are going through this again!

I have a question for you. Has Kay Tar ever had an oral motor consultation? I know she has had speech therapy, but I am talking about an actual feeding eval? I work at a therapy center for kids up here in the Seattle area and a Dr. Gay Lloyd Pinder, (who is a founder of our center) works there. She is pretty well known in the national circles as far as feeding--I have seen the hope she can offer parents, and think/hope maybe you can find someone in your area to help. Dr. Pinder has helped many families avoid G-tubes--anyway--I guess I want you to know that there is help out there and hope.....

Amy said...

Oh man Kyla, I didn't realize yall were back to this. Thank God for Pediasure. I just wish there was some simple answer out there to help. I can only imagine how hard this is.

Big Hugs.