Because of the episode at school, Xanthe went in for an EEG and a consultation with the neurology docs. She could only sleep for four hours the night before! Torture for Mom! Thursday night, I took her to a movie at 9:30. We ate lots of popcorn. Then we wandered around Smith's looking for fun gifts. We put together a basket and doorbell ditched a friend at midnight. Actually, we just left the stuff. We wouldn't ring a doorbell that late! We managed to stay up until one o'clock, so we didn't have to wake up until 5. By the time we had had breakfast at McDonald's, it was time to get ready and take kids to all their schools. Frank and Ruby have different schedules, and Araceli and Freestone go to different junior highs, so there's quite a bit of driving going on in the mornings. It kept us busy until it was time to go.
Xanthe and I both fell asleep during the EEG. The doc said it came out normal, and recommended an MRI next. I'm glad we're doing that, because Xanthe's genetic history is such a mystery. These episodes could be "conversion disorder," I think where the brain basically turns off and turns back on under stress. Interestingly, the doctor said it could be related to food stress. Not hunger, but stress related to food. Well, Xanthe certainly has that. She doesn't grasp the concept of portions, or have any idea of how hungry she is or isn't. Her relationship to food is very, very primal. It's one streamlined idea: "Get food." The stress of eating being more complicated than that is a struggle as she gets older. One more thing that I thought would be solved once Xanthe had plenty to eat. We have never figured this one out. "Letting her eat as much as she wants" has been an epic, decade-long fail for our family. You see, when food is present, Xanthe is stressed. If she has a little snack in her school backpack, she is absolutely consumed with when she's going to be able to eat it. We're still having to have the conversation, "I'm going to give you your food first, so when you're finished, other people may still be eating, and that's OK, because you won't be hungry." That has been a very difficult concept, because if someone is eating, or if someone has something different than what Xanthe has, she goes ballistic. For years, we avoided taking her places where there was food, like a recital with a reception afterwards, or a church function where there was a refreshment table set up with goodies meant to be eaten after the event. Xanthe would writhe in agony, rubbing her eyes, a sure sign that she is under a great deal of stress. She would literally ruin anything where food was involved, for the whole family.
It's irritating when people chirp cute little solutions to me, as if during the past ten years, we hadn't thought of "letting her have a snack in her backpack," or "let her have as much as she wants," or "let her choose what you have for dinner." That's cute, but you have no idea the enormous amount of stress Xanthe's food issues present for the whole family. Here's an example of what we've been dealing with. This was when I was still optimistic that Xanthe would grow out of these terrible issues. The tone of the post belies the desperation that I felt when things like the kid with the Doritos happened. Even now, I still feel extremely tense whenever Xanthe and food are in the same room.
So I don't know whether this stress is related to food, but the last two times it has happened, there was food stress. At play practice, she hadn't had breakfast and I was going to bring it to her, but she didn't know exactly what time. At school, she had rushed out the door that morning with a breakfast that she wasn't excited about, and then her friend was stealing her fries at lunch. She wasn't hungry, she was just worried she wouldn't get enough, meaning ALL of the food that she could imagine wanting.
Anyway, towards the end of the doctor visit, where I had promised Xanthe there would be no shots, the nurse suggested getting a flu shot. Xanthe glared at me. She suddenly got extremely hungry and couldn't think about anything else. She flopped, sighed, complained, cried and wanted to talk incessantly about where to go eat. I got her out of there as quickly as I could, no shot, and sped to the nearest Wendy's after picking up Ptolemy. I got her chicken nuggets, a drink, a Frosty, a chicken sandwich and fries. I figured she deserved one of everything after getting no sleep and spending the morning at the doctor. Ptolemy got a junior cheeseburger, period. Even so, there was a crisis because Ptolemy took the tomato off his burger and put it in the bag. Even though Xanthe had a chicken sandwich, fries, chicken nuggets, a drink AND a Frosty, she did not have a tomato. She HAD to have that tomato. It was aggravating, because I was driving and couldn't help her, and I didn't want her to make a mess trying to retrieve a slice of tomato out of a bag, when she had a feast right in front of her.
So the saga continues. Do I pull the car over so Xanthe can have a discarded tomato slice? She is almost 12, and she lives in the real world. At some point, there has to be some normalcy surrounding her food habits. The older she gets, the more we have tried to gently work on these things, and I think that's part of the reason for the increased stress levels, who knows? But now, every time she fixes a plate of food, she brings it to me to show me, proudly, that she took a reasonable amount of food. She wants to get better, but, like me, she doesn't know how. I do know, from reading mountains of literature on the subject, that there is no fix. It's just adapting to the situation with coping mechanisms, and there is just no quick way to do that. When a baby is hungry, that hunger lasts for a lifetime. That's why Ptolemy and Tziporah were fed on demand, and never, never made to adhere to a schedule. I couldn't risk them feeling that never-ending hunger that has made Xanthe's life such a challenge.
2 comments:
I feel for you. I have a foodie, too. She'll eat herself sick - no matter what I do. I was prepared early on, as she was my third child from China, so when all the usual things didn't work, we had a rule: She could not talk about food. At all. Unless I asked her specific questions, such as, would you like the carrots or the broccoli. By this time, of course, I knew her body well and realized she does have a quick metabolism and needed larger servings than my other kids, but she just doesn't feel full until she's sick and even then, she'd eat more if she could.
She has low I.Q. and is considered disabled. She can still understand about food, but doesn't have the intellect to reason herself out of her emotional responses and probably never will.
Your situation with your daughter sounds similar in some ways, but not others. Instead of low I.Q., it sounds more like PTSD, which causes the same thing to happen, that primal need for food.
My daughter does use this to get attention from those who don't know her. This was one of the reasons we banned talking about food; she'd solicit conversations with everyone and anyone about food.
She'll stare at others' food. She'll take it out of the trash can, off the ground, essentially from anywhere.
I set very strict parameters because, like you, having my daughter in the same room as food, especially at social functions and restaurants, is very stressful for me. I don't know what she may do - or I DO know and it's not appropriate.
In your daughter's case, there may also be a physical component. Some people don't have the normal nerve pathways that tell them they are full.
There can also be addictions to food that begin due to reasons such as your child's early deprivation.
As another mom with a child similar to this, and as an LDS mom, too, if you'd like to talk about it together, perhaps we can help each other come up with new ideas. My comments are moderated on my blog so please feel free to leave your contact info and I won't publish it.
Such a challenge as I know you want to help Xanthe with this. Praying you can find things to help her...and thankful for a mom who does all that she can!!
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