Friday, February 29, 2008

Hmmmm?

This morning I didn't restate yesterday's terms, but N assumed they were in force. So, he made it to school on time again.

For the past two days, N has been doing something weird. He wanted to know if he at a lot of calories before dinner, would I not push him to eat so much at dinner/evening snack. I'm not sure what that's about. Is he just really hungry when he gets home and wants to eat a lot and wants it to "count" toward his daily total? The problem, though, is that he doesn't usually eat his morning snack or a very good lunch. So, we're usually playing catch up throughout the afternoon anyway. He comes home, has some "make-up" lunch and a "make-up" morning snack and he still has to have his afternoon snack. He is eating a lot of food already. Is he just playing a game of semantics and trying to get his calories down? I've heard a lot more "this will make me fat" comments in the past couple of days.

Thursday, February 28, 2008

Call My Bluff???

I tried something this morning. It was a little risky, and I knew it could backfire. But I had a plan if it did backfire. J had orchestra this morning. I pick him up (at N's school) and transfer him back to our neighborhood school. This all coincides with the morning bell. I try to get N to school a few minutes early and J is usually late (this is how it worked last year).

Anyway, I informed N this morning that I would only be making one trip to his school this morning. I told him that if he wasn't ready by the time I left, that he wouldn't be going to school. He was really surprised, but boy did he hurry. He got to school on time and there were no battles. I knew that I could try that tactic today because he was excited about a street-ball game and he had already picked his clothes. I also knew that if he called my bluff, I could keep him busy working on a new list of late work (that he brought home yesterday -- he's still getting all Ns -- the equivalent of an F). But it worked.

Wednesday, February 27, 2008

Late

It's a busy week and I'm getting a cold.

N went to school late for the third day in a row. There hasn't been any crying. He'll get a little angry if I push him, but I feel like he is taking advantage of our previous leniency. He put his clothes out last night (after he got mad at me for not washing the jeans he was still wearing -- go figure). But he debated and questioned his clothes choice even while I was driving him to school. He is very emotional and grumpy, but I am really thinking that right now it is more about hormone shifts and growing up, than it is about the anorexia -- probably it is some of both.

It seems like he is doing well with his friends at school. I'm also being able to pressure him some about his school work. I would say he has gone from doing "F" (no) work to about "C" work lately. Everything is better when he is keeping up with his school work. He'll even do it without arguing and complaining. Hopefully these are all signs that he is getting better.

He has been responding violently (hitting or kicking) to his brother. I'm concerned about that. I've restricted his computer/video-game/tv time (which we have used as a distraction in the past, but I think we can use other techniques now) as a natural consequence. What I'm most concerned about right now, is that he doesn't seem to care about anything but his friends at school. It's hard to find natural consequences that will work when there isn't anything he cares about.

Tuesday, February 26, 2008

Church

I've continued to keep N's calories up the past few days. And though there have been periods of resistance, he seems to be getting used to the idea of more. I'm also doing better at using the "magic plate" idea. I've let N negotiate far too much. He starts to think he is entitled to have a choice. But as I have removed the choices (and after a little resistance), it seems that meals are involving far less drama these last few days.

On Sunday, I forgot his church snack. So, I had to take N home between meetings to get one. That was a mistake! He refused to come back. After 10 minutes of struggling, I got him to get back in the car (after I let him know that I was going to leave without him). He came, but wouldn't get out of the car. I pulled T out of the nursery to see if he would convince N to come in. But N wouldn't come in. Finally, we just left him alone and went to our classes. Apparently, N came in after 7 or 8 minutes. He is such a good kid and is generally obedient and tries to do what is right. Sometimes the anorexia gets in the way. I'm proud of him for ultimately making the right choice. I think that part of this is N becoming a teenager and wanting to be independent. This is probably a good example of teaching him what is right, reminding him that we expect him to choose the right, but letting him decide for himself.

Sunday, February 24, 2008

Sunday Weigh-In

N's weight was 87.2 lbs this morning. He has been packing in the calories all week and apparently it's hardly made a dent. So frustrating.

Thursday, February 21, 2008

What should we expect from our therapist?

I posted this question on http://aroundthedinnertable.org/ yesterday:


I'm wondering if you could describe to me what a typical session with your therapist looks like.

We are using a PhD that specializes in family issues and eating disorders (is associated with a local in-patient eating disorder center). He is a good mix of both and he fully supports us in using family-based therapy. I've felt like he was a good choice because there are no Maudsley therapist around us. Our first months of visits have been fantastic. He gave a lot of new ideas. N likes him and answers his questions honestly (although the therapist has never seen our son when the anorexia was pushing through). We attend the sessions together (usually our son and one of the parents).

Lately, though, I've wondered if progress with the therapist has stalled. Most things that come up are just repeats of previous conversations. The therapist even told me once that he had pretty much given me "everything he had" and we would just be working on tweaking things and adjusting things as our son needed it. I was learning so much and so fast when our son was first diagnosed. Maybe it feels stagnant to me because the learning curve has dropped off and now things with my son are more like a broken record.

We typically visit every-other week for about 50 minutes. The therapist usually asks my son how he is doing (going through the typical school, friends, how do you feel about yourself? ocd, anxiety, stress, and any other previous issues). Then he'll ask me to characterize how things are going. We'll talk about this generally for a while. The therapist will give suggestions for any new (or not working) issues a long the way. Then the therapist will ask me if there are any specific things that he should address. I'll make a suggestion (like last night it was managing stress). Then the therapist will give my son some new ideas (or repeat old ones) on how to deal with that issue (stress last night). We all contribute, but I try to stay out of it mostly. I can tell that my son "sugar-coats" everything so sometimes I'll throw in my thoughts. I also try to help my son apply what the therapist is talking about. I think the therapist usually deals with older adolescents and adults. But he has a 12 year-old son, so he is usually pretty good about applying ideas to an 11-year old mind. But sometimes, I think, it helps me to put things in a context that I know my son will understand.

Should more be happening?

Shopping

Last night after N's visit with his therapist, I took him shopping. We went to Old Navy, which seems to be where he usually finds clothes that he likes. I was trying to take advantage of it being just the two of us (and having a few hours to spend).

N had identified several shirts on their website that he liked. He has been begging me for several weeks now to go buy them. So, we immediately found those shirts (all available in his size) and headed to the dressing room. There he tried on each of the shirts and then tossed them away as he became more upset, physical and agitated. He ranted about being too fat, the shirts don't look good on me, this is the worst time of the day to go shopping, etc. At one point, he slumped down to the corner of the dressing room with tears in his eyes. He was so angry and sad and so anorexic!

My mother's instinct had already told me that clothes weren't the answer to his morning problems. I've seen it happen over and over. He latches onto a shirt and then the anorexia eventually convinces him that he looks fat in it. So that shirt is then thrown into the growing pile in his closet and he begins the search for another.

He was desperate, though, to find some new shirts. He combed the store a second and a third time. He didn't like anything and everything made him look fat. Then he asked about pants. We found a pair in the style he wears in his size, but it wasn't what he wanted. [He wants the new style of skin-tight pegged pants that some guys are wearing now. He wants to look as skinny as possible. I'm so glad that they didn't offer that style in boy's sizes.] At this point, I could tell it was time to leave. As N became more desperate, he also became more physical. He'll get right in my face, put his hands on my shoulders and all but shout in my face. He was being disrespectful and things were just spiralling fast. I let him know that we were leaving and headed to the parking lot. He ultimately followed me, but wouldn't talk all the way home.

While we were in the store, he continued to say that I wasn't going to bring him shopping again. So, he HAD to find clothes. I think this fueled his desperation. But he was right. I'll think twice before I take him shopping for clothes again.

Wednesday, February 20, 2008

Tag-Team Parenting

T woke N up at 6:45 am this morning. By 7:05, he still wasn't out of bed, so I went and kissed him and gave him a reminder to get up. He was already in a terrible mood. He growled, "get out of my room!" After a reminder about talking to each other respectfully, he growled (with a little less of an edge), "PLEASE! get out of my room." There's no need to say it, but obviously we had a long morning. He couldn't pick a shirt. He didn't want his shake. He was so grumpy.

He missed two snacks yesterday and didn't pick out his clothes last night. Those things probably contributed to a lousy morning.

T stayed here to help again. I appreciate all of the things he does to help, but morning is definitely where T makes a huge difference. T is able to attend to N without being distracted by the other boys' needs. So, I take care of I and J while T cheerleads N out the door. N was only a little late, but T had to really focus on N to help him get to school.

We have an appointment with the therapist tonight. Typically, T and I alternate going with N. Because T works during the day, he isn't often here for some of the worst of the anorexia. So, I'll go tonight. Hopefully, I'll be able to update Dr. R as to N's lack of progress recently (which I attribute to his stalled weight-gain). We haven't been to the therapist for more than a month now. That's my fault. I should have called earlier for another appointment (usually we make our return appointment in Dr. R's office, but didn't this time). I think it's good, still, for T to go half of the time. We have a tag-team parenting system for dealing with N that seems to be working well. Sometimes T is able to help N in ways that I can't. Sometimes I say the absolute wrong thing in the wrong moment. T is better at gaging N and his moods. In some ways I think that T is the most influential parent right now.

Tuesday, February 19, 2008

Tuesday

Today is like a Monday. N headed back to school this morning after an extra long weekend. Monday mornings seems to be perennially bad for N. I've been extra diligent with N's calories all weekend, hoping to prevent a bad return (and having extra resolve to not let his weight fall again). I also made sure he chose his clothes last night (and I washed them all). T stayed home this morning to help N get out the door. And it all worked. N had a good morning. He was only a few minutes late.

I noticed that both yesterday and Sunday, N was doing the token resistance to eating. He complains and tries to negotiate, but he was doing it half-heartedly. I hope that means that our united front is helping N to understand that we won't ever give in.

With the exception of that half-hearted resistance to food, we had a pretty normal weekend. He was predictably late to bed, but we didn't have any big emotional anorexic moments. I even found myself laying in bed this morning thinking about why N won't do his homework. It took a moment before I remembered, "Oh, yeah." It's so strange to me how the anorexia ebbs and flows. Just Friday, N was paralyzed by the anorexia. It's probably more insidious than I think and just waits below the surface waiting for the first opportunity.

Sunday, February 17, 2008

Sunday Weigh-In

After several weeks of missing weigh-ins, we finally did one this morning. N weighs 86.9 lbs. This is down .6 lbs from the last time we weighed him.

I'm currently fighting the anorexia at almost every meal & snack.

Friday, February 15, 2008

Cycles

I don't know if this is a kick-back from Valentine's Day (and the school parties, treats and our family party), but N is still here this morning. He was cranky first thing this morning. T knew it was going to be a tough morning and did everything he could to get N moving before he had to go.

N has spent the past two hours in a terrible mood. He has pretty much lain on the floor all morning. He alternates between being angry and crying and berating himself. He just finished crying while curled up in a ball. With him, it is so cyclical. He spends a while falling deeper into despair. Usually that's when I see so much anger and pushing back. Then he moves into sadness and cries. The next stage is guilt. Then he finally decides to be more proactive and tries a little harder. N has moved into that last stage now, I think. He is in the kitchen making croissants. I think he almost confessed to having not eaten enough a few minutes ago. I appreciate that he hates how he feels and is willing to eat to try and fix it.

The party went well on Wednesday. We were in white-out conditions when I dropped him off. He had a really good time, I think, and thankfully the weather had cleared when it was time to get him.

Wednesday, February 13, 2008

Party

N has been invited to a party tonight. It's a good sign that he has made some friends at school and is gaining some confidence. We're having to change all of our plans in order to accomodate the party (including not going on our date). We have used the party to motivate and encourage N when rough moments happen the past few days. He got all of his homework done yesterday. But, he was late this morning. I could tell that he was trying hard, though.

So, we're going to let him go. It's too bad that these same kids won't go to junior-high with him. We'll have to start all over again in August. I'm glad he has some friends again.

Tuesday, February 12, 2008

100th Post

N has done better since Saturday. It was good to have T return from his academic conference. He was back Sunday night. Starting Sunday evening, I could tell that Monday was going to be a battle (Mondays usually are). N asked for a dirty sweatshirt to be washed late Sunday evening. I agreed to do it on Monday morning (which he misheard -- but thankfully T witnessed). So, the fit about the sweatshirt started first thing Monday morning. We had braced for it and T jumped right in and became N's personal cheerleader all morning. T stayed home Monday morning until N made it to school, which was late but not too late. N is eating again, but I can see that the battle with the resurgging anorexia is still happening silently. He is upset at his high calories (which he shouldn't be counting) each day. He just informed me that today was a terrible day, just like yesterday because he had 2400 calories.

I didn't weigh N on Sunday, but I hope he is making some weight progress.

This is the 100th post I've written. It's hard to recall life before anorexia, I must confess. I read about this research study on "semistarvation neurosis" a few days ago: http://junkfoodscience.blogspot.com/2008/02/how-weve-came-to-believe-that.html. N's doctor referred to this study and we've heard others mention it as well. The symptoms of starvation are consistent with what we've seen in N. What is particularly interesting to me right now, is the fact that it took between 5 and 9 months after weight restoration for these men to behave normally. I suspect, even with N's weight gain, that we've still got a long road ahead of us. My biggest wish right now would be for things to be "back-to-normal" by fall and the start of junior-high.

Saturday, February 9, 2008

Expectations

N restricted all day yesterday. I kept him home in an effort to get his calories up and keep his exercise down. Last night at 10:30 p.m., he was still laying on my bed refusing to drink a single cup of milk. I finally turned all the lights off and climbed in bed. At that point, he finally agreed to drink the milk. I was so glad to have him drink the milk -- I was so tired from such a long day.

We talked at length yesterday about my expectations for him getting better. I made it clear that we were not going to stop him at this current weight. I think that was a hard fact to swallow.

This morning, he seems to be doing a bit better. He ate his breakfast without too much fuss. He's also had a morning snack (banana and Twix bar).

Friday, February 8, 2008

A New Problem

I feel like we've gone back in time. N is restricting like crazy today. It has been building since yesterday. He is refusing to eat his breakfast -- even refusing to sit at the table. It doesn't matter what I say, he responds, "no." Obviously, I can't make him eat or sit at the table. But we won't be going anywhere until he finishes.

He hasn't done this since the first week of refeeding. I have a rising hypothesis as to why this is happening. I think it is because he heard the doctor and nutritionist say that his current weight is fine. So, he thinks he is done gaining weight. He hasn't gained any weight over the past 3 weeks. We need to continue the same diet just to maintain his weight.

I've added some calories to his diet (because he is eliminating them again everywhere that he can get away with it). He is fighting back hard. And I have no credibility.

I've read, however, so many stories of families who stop their child's weight gain prematurely, which eventually leads to relapse. I think 90 lbs (per the doctor's scale -- mine says 87.5 lbs) is still way too low for his body. Clearly, his anorexic thoughts and behaviors are still prevailing. I'm not sure what to do about this. We don't meet with those same doctors again until March. And even then, I'm not sure that they will agree about the additional weight gain.

Thursday, February 7, 2008

N did better this morning. Everything, including underwear, was decided upon last night. He was pretty excited to go to a special camp this morning with his class. He was elected as ambassador by his classmates (so good for his self-worth) for this camp.

Wednesday, February 6, 2008

Underwear

N was late again today. This time, though, it was underwear. He won't wear some of the stuff he used to wear without any problems. I finally dumped the pile out of his closet and found him some clean "acceptable" underwear. Then he wasn't sure he wanted to wear the shirt he chose. At this point he was almost an hour late. I gave him 15 minutes to work it out -- and let him know that I would pick his clothes after that. Apparently the threat was enough. He got it together and was in school by 9:00.

I need to have him lay out everything the night before, including his underwear.

Tuesday, February 5, 2008

Parent Suggestions

I got several suggestions from the parent-support forum on how to help N with his mornings.
  • Make sure his evening snack is higher in fats/protein.
  • Have him choose his outfit the night before, but not right before bed (maybe during some free time).
  • Choose his outfit for him, if he can't by a certain time.
  • Make sure that his breakfast is high in protein/fats.
  • Seperate eating breakfast from dressing as much as is possible.

We tried making some of these changes. N picked his shirt last night without any problems (he had "discovered" one of J's sweatshirts earlier in the day and was excited to wear it). He got to school on time. T was here, however. So, the true test will be on a Monday when T isn't here.

Monday, February 4, 2008

The Last Hurdle?

I posted this on the parent's forum this morning:

Things have improved so much over the past few months. My son's weight is up to 87.5 lbs (59 1/4 inches tall). He is eating and generally responds to our expectations with occasional resistance. There are a handful of OCD or anxiety behaviors that still linger. He is also still affected by stress.

The biggest problem right now is our mornings. He can get hung-up for up to 4 hours just choosing clothes. They are too little or too big. Some days, he thinks the clothes smell bad. Usually the problem is with shirts. Today it is with his pants (which have never been an issue before). Everything makes him feel self-conscious. He gets angry and despondent. I've learned to steer clear and he'll often work through it on his own, but it takes hours. It's like the anorexia is holding him hostage. He has made so much improvement in every other area, but the mornings actually seem to be getting worse. He responded once to a suggestion of buying new clothes. So we got several new shirts. That helped for a week or two, but now those shirts have been thrown to the back of his closet.

He has been doing better at school. He's made several friends. He seems to enjoy school and comes home happy usually. He is getting more work done (though we are not stressing about his grades or performance in any way). I think school is the most concentrated "fear" that he has -- the biggest reason to feel self-conscious. He's worried about what all of his peers think of him. So worried, that it paralyzes him every morning.

This is the last big issue that plagues him from having mostly normal days.

What can I do? How can I help him work through this?


Added note: I think it is interesting that N doesn't seem to have as many problems when T is here in the mornings. That isn't always possible, so I still need to find a solution. T is already trying to be here in the mornings as much as is possible. There is also a pattern of having this problem each Monday morning.

Sunday, February 3, 2008

Weigh-In

N weighed 87.5 this morning. That is exactly the same as when I weighed him last time.

Saturday, February 2, 2008

Children's Hopsital

N had his appointment at the Children's Hospital on Thursday. T, N and I traveled there together. The team spent three hours with us. I couldn't believe it! They weighed N and took his vitals and did a physical check. We met with the gastroenterologist who took N's history and then responded to any physical concerns. We also discussed any possible strep connections with the doctor. [His response was so different from the local pediatric infectious disease doctor we saw earlier.] He had such an open, interested-in-research attitude. He wanted to explore any possibilities along those lines (and was intrigued by the possible connection). By the time we were done, he had already mentally identified a doctor or two specializing in strep and maybe another working on PANDAS with whom he wanted to talk. We also met with a social worker. I'm still not sure what her roll is. And then we met with a dietician.

They poured information into us. Most things we had already learned along the way. Most of the best information had already come from the parent-support forum at aroundthedinnertable.org. It just reminded me how much we really needed all of this support five months ago when we felt like we were drowning. They were all very supportive of Maudsley's refeeding.

I differed with them only on one main point. They suggested that N was already "weight-restored." On their scales, he was weighing 90 lbs (59 1/4 inches). The goal weight that I set, based on his past height (58 3/4 inches) and his own past percentiles was more like 95 lbs. I've heard so many parents at aroundthedinnertable.org talk about the need to aim higher than just at the 50th percentile. That is where N is right now. In fact, even at his lowest weight, he was maybe around the 15th or 25th percentile (still normal weight-range to all the doctors). I realize that N may still need time for his brain to become fully renourished, but I feel like his weight needs to be a bit higher. I disagree especially because I see the anorexic behavior decreasing with each pound gained. He has come so far -- why would we stop?

In almost every other way, we were all on the same page. They are good doctors and their team approach is refreshing. We're scheduled to go back in March. They were going to be contacting and communicating with N's therapist, which is fantastic. I'm going to work planning N's meals with more heart-healthy foods. I already know that will be a challenge. I've struggled to find sufficient foods for him that won't fill him up too fast, yet are nutritionally dense.