Magic Plate

This morning after negotiating breakfast foods for over 20 minutes, I finally ended it and chose the foods myself. N was not happy, but I think I need to end the regular negotiations. We've always let him know that a certain number of calories were required, but he'll throw out tons of food menu combinations trying to find exactly the right one (i.e. the one with the least calories). I understand that sometimes he has his own likes and dislikes. I can also understand that he is getting tired of certain foods. But he is so determined to "optimize" what he eats (sort of the "if I'm going to eat, then I want it to be the foods I like the very most"). He can take forever trying to decide what he wants the very most. I think it is setting up a bad pattern. So, we'll try to move back to the "magic plate" concept as taught in Maudsley.

Contacts

I've attempted to make contact with a doctor at NIH. I am unsure as to whether or not she will have time to respond to my email. I'm sure that she can't respond to every possible patient with anorexia. Perhaps she will forward to one of her post-docs and they will answer. I'm most interested in the successful types of treatment they may have found for PANDAS-AN.

N is doing okay. His calories are still not up to where they should be. I like to give him two choices for snacks and he always wants to negotiate for a third or fourth choice. As long as the choices are similar calorically, I don't mind the negotiations. However, he seems to be increasingly demanding. He doesn't just want to choose pancakes -- but wants them to be buttermilk and only 5 inches in diameter. He'll still choose the lesser calories in a batch of choices -- even if it is less by only 5 calories. And he still counts calories. I have to sit down and use a calculator to figure out his daily totals. If I were to ask him (which I don't - but some times he offers), he always knows exactly how many he has already had. And he is usually right.

I've also noticed that he is a little sneaky about his calories. I'll tell him that he needs a snack. We'll agree upon what that snack is. Then he won't ever eat it. I've got to be better about following through immediately, instead of an hour later. He will also leave the syrup off of his pancakes or give pieces of his Pop Tart to his little brother, thus reducing the calories overall. I want to nip the sneakiness now. I think that it could become a terrible pattern.

Test Results

Antistreptolysin O titer (ASO)
Normal results (<100)
N's results - 245

Antideoxyribonuclease-B titer (anti-DNase B, or ADB)
Normal results (0 - 170)
N's results - 486

Obviously his antibodies to strep are high. So, what does this mean? I'm not sure. We'll find out more, I suppose, next week when N sees a pediatric infectious disease doctor.

Good, Better, Best

I weighed N this morning. He is up 1/2 pound to 85.6.

******

I recently heard this quote: "We should begin by recognizing the reality that just because something is good is not a sufficient reason for doing it. The number of good things we can do far exceeds the time available to accomplish them. Some things are better than good, and these are the things that should command priority attention in our lives." (Elder Dallin Oaks)

Just before I heard this quote, my husband and I had been discussing how we could help N get better. Besides loving him, feeding him, and helping him get the care that he needs, we both felt that we needed to reduce our family activities. We were involved in so much: family, home, church, work, school, orchestra, parent/school organizations, city affairs, community issues, sports, music lessons, research, etc. We were filling our lives with so many "good" things that we didn't have enough time left for some of the "best" things. N's needs were taking a back seat, some days, to the busyness of many of these activities.

So, I have pulled out of or pulled back from most of these activities. We have continued to be involved at church and I still play occasionally in the local orchestra. J is still playing soccer and violin. And of course school and work can't be eliminated. But that's pretty much it. I'm also learning to say, "no." Because of N, I feel a strong compelling reason to say, "no" yet no need to offer an explanation (for N's privacy). I'm getting better at it. We are still pretty busy -- but not nearly so frazzled and frustrated at the end of the day. And we are able to focus more on N. He is overly affected by stress right now. By reducing and focusing on the "best" parts of our lives, we've been able to see a big difference in all of us.

N is restricting a bit today. He played with a friend this morning. When we suggested that he call his new friend from school, he said that he felt too self conscious. He has skipped both of his snacks today.

Merry Christmas!

It's been a good day. N has done well and enjoyed the fun treats around the house. It has been wonderful to spend the day as a family.

I'm reminded about how many blessings we have in our lives. There is so much to be thankful for. I have three wonderful boys. My husband is a good father -- and he is good to me. T has a good job. We have a beautiful home that is just the right size for our little family. We really have everything that we need. We have wonderful, supportive extended families. We also have the support and help of so many parents individuals that have struggled or are struggling with children with anorexia. We have knowledge and research and current studies that are helping us to find help for our son.

Today on Christmas day, I'm particularly mindful of and thankful for the birth of Jesus Christ. I'm thinking a lot about His birth being part of Heavenly Father's plan that ultimately can lead to my family being together forever. I love my family so much. I love N so much. I want to be with them/him always! I'm thankful for Jesus Christ's birth, life and death. I can feel so deeply that He (my brother Jesus Christ) and my Heavenly Father love me and that they love and care about N.

Merry Christmas to all of you who read this blog and support/pray for me and my son -- whether in your hearts or in your comments. I hope you all have wonderful holidays!

Christmas Eve

We've been visiting family since Saturday. N is pretty hesitant to make a scene in front of all of his relatives. Everyone has been great with N. I'm the only one making stupid comments. We told N that he couldn't have any "5 calorie" soda until he had finished all of his full calorie/fat foods. I found that so ironic given the current dialogue of dieting. So I made a comment -- insert foot in mouth. Last night and this morning, we've had to push a bit more. He's resisting and restricting again. He has tried to "get away" with it by sneaking away from his food while we are busy with relatives. We let him know that we would go home if his eating became a problem. I did have to remind him once or twice. We're headed home today, so I think he'll make it.

Sledding

N is feeling very self-conscious today -- so much so that he wouldn't wear his "puffy" coat and snow-pants to go sledding. He thinks they make him look fat. We have a wonderful sledding hill near our home -- and fresh snow, but he wouldn't go. So, he moped around the house for several hours. Eventually he got his chores done and has gone to a friend's house.

I took him to the hospital last night for his blood test. I suspect we won't hear any results until after the holidays.

Update

I just heard back. Our pediatrician is referring us to an infectious disease expert. This doctor is willing to do the tests, but doesn't really buy into PANDAS affecting anorexia (he thinks it has more to do with movement and tics). Anyway, at least they were willing to do the tests (ASO Titer, AntiDNA, and FreeT). If the antibody levels come back high, then I need to be armed with a bunch of research and be ready to make a case for antibiotic treatment for N.

PANDAS-AN

I've done a lot of research in the last 24 hours. I've found a lot of interesting things about the strep/anorexia connection.

The scientific term is PANDAS-AN or Anorexia caused by "Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci." There have been some small studies and ongoing research done through the National Institute of Health as well as other universities and research centers.

I'm probably oversimplifying this, but here is the basic idea. Strep triggers an immune response in every person's body. Because the strep is remarkably similar to our own cell structures, our immune system sometimes ends up attacking our own bodies (as in Rheumatic Fever our own immune system actually attacks and damages the heart). Anyway, the theory is that strep, in a similar way, is causing an autoimmune response either to areas of the brain associated with anorexia or areas near to those centers. In some cases, a blood test to determine antibody levels, followed with a course of antibiotics has resulted in anorexic symptoms abating. There has also been some discussion about these same areas becoming inflamed -- not necessarily damaged (which could explain why antibiotics could possibly "cure" the disease). Eventual damage to these centers could explain why patients that are more entrenched into the anorexia don't respond to the antibiotics.

My pediatrician just returned my call from yesterday. He recently went to a conference where PANDAS were discussed. We talked about the possible applications for N. He is going to contact some of the researchers/presenters and find out about suggested courses of action. Our pediatrician is a good man and a good doctor, even if he hasn't always been aware of needed care for my son. I'm pleased that he was willing to hear me out -- and I'm even more pleased that he was already aware of PANDAS.

I don't know if this is a solution or help for N. But he has such a history of strep. It seems logical that we should follow up with any possibilities in this line of research.

Anorexia and Strep

N is battling the anorexia full force today. He descended into a lot of anorexic thoughts last night. He ate dinner & snacks, but resisted. He didn't want to go to scouts. He is so obsessed & worried that he'll be fat when he gets up to weight. Dad was home again this morning so N made it to school on time. I just picked him up from school a few minutes ago -- and he was already fussing about having to eat & not feeling fit (we won't let him exercise until he is back up to weight).

On a different topic, I read some research this afternoon that suggests that strep can cause anorexia in some cases. I'm interested in finding more about this. N has a terrible history of strep. He's gotten sick with it every year since he was four. In fact, he finally had his tonsils removed because of repeat infections. That year he had strep 11 times! I've heard some doctors state that you can't get strep after your tonsils have been removed. But our family is living proof that that is NOT true! Three of us, including N have had our tonsils out, but we continue to get strep. And we get it bad -- high fever, headaches, vomiting, the works. N is a lot younger than the typical anorexic patient. This fact, his rapid onset of anorexia, and his history of strep make this a topic that I want to explore more.

I've put a call into his pediatrician's office to ask if we can do a blood test for strep antibodies. I'm not sure how they'll respond -- given that his current doctor has been pretty clueless about active involvement with the anorexia. It sounds like even if strep caused the anorexia, it doesn't really change his treatment. It does make me wonder, though, about using anti-inflammatory medications to address possible brain inflammation. I don't want to jump on every theory to the detriment of N's treatment. But some antibiotics, a blood test, and some Motrin don't seem too crazy to me. Some days I'd be willing to try almost anything.

Dad

It's finals week at the University, which means T can be around more in the mornings. T offered to take N to school, if he was on time. T helped him pick out a shirt and stood right by encouraging him. N was a bit frustrated, but made it on time. It was nice to have a smooth morning.

Upcoming Holidays

We're going to spend several days with my extended family during the holidays. At various points, most of N's aunts, uncles and cousins will be there. It will be interesting to take care of N's caloric needs while not drawing attention to him. Each of my siblings is aware of the anorexia. We've asked them to pray and fast for N -- but to not share anything with their children. My family rarely talks about diets, weight or calories. But these subjects have come up before. So, I felt like I needed to send some dos and don'ts to help them think about some of these things beforehand. This is the message that I sent:

****************************

Since we're all going to be together for some of the holidays, I wanted to ask for your help with N. He listens to everyone really carefully and is very affected by the things you say. So if you don't mind, I'm going to just give you a do/don't list.

Do:
Give honest praise.
Talk to him.
Ask about playing the guitar, playstation, school, scouts or other things he is interested in.
Offer him food (if you're offering it to everyone). It's okay if he says, "no."
Say, "it's great to see you."
Gracefully change the subject if weight, calories, etc. come up.
Change the channel if these topics come up in a tv show.
Hide the scale (is that okay, Mom?).

Don't:
Talk about diets, weight, or sizes.
Push him to eat (we'll do that).
Give him lectures.
Give him too many decisions to make.
Say, "you look great" or "you're too skinny." It just reinforces the anorexia.
Talk about calories, fat content, trans fats or other such things.
Talk about healthy foods, good/bad foods or exercise. It's okay for you to exercise -- just don't talk about it.
Let him search for "anorexia" or "calories" on the computer. I don't expect you to enforce this -- I'll do it. But if you see it happening, please let me know privately.
Be offended if I kick you under the table for any of the above "don'ts."

We'll have some extra foods there for N (muffins, poptarts, carnation instant breakfast, whole milk, etc.). I'll bring some to share with you and your kids (I don't want to make a scene with the other kids not getting to have some). Just be aware that those foods are there to help us get N enough calories each day. I'll try to label them so you know.

*****************************

Did I forget anything? I don't want to demand that anyone change their behavior. I do however, want them to think about these things.

I know I can't control all of N's environments and protect him from these comments and topics either. In fact, many people have commented to N about how he has lost a lot of weight and how good he looks. And of course, I cringe inside when this happens. I also realize that negative body messages are everywhere including on tv, on the computer, and in daily conversations around us. I obviously can't send this message to everyone (although I wish I could). But N is close to his extended family -- and what they say, think and do has added weight.

Still Sick

N struggled this morning (75 minutes late to school). It didn't help that his lava lamp blew up all over his room. I've spent the morning trying to clean up the yellow wax, which is everywhere and seems to be leaving behind a stain. N also had rough spots twice on Sunday and once on Saturday. N still cries sometimes, but mostly he lets me know that he is struggling. He seems paralyzed by the anorexia. He also seems to get overwhelmed easily. It has helped to break tasks/chores/homework down into one step at a time. He copes better overall with that strategy -- rather than typically throwing his hands up and giving up. I also give him lots of hugs and try to help him in any way that I can. Sometimes he just needs to be alone for a while. After some quiet time, he'll do better.

A Friend

We've had another good 24 hours with no sign of the anorexia.

Last night, N invited a friend to come and watch Harry Potter. It was a successful night. His new friend seems like a good kid. I can tell that they have become real friends. It's so good for N's spirits!

Since N has been sick, he has insisted that no one likes him -- that he doesn't have any friends at school. He is in a new school (since last year). T went with him to a school camp and confirmed that N really didn't have any friends. So, we've been really deliberate with him about finding a friend. We talked about planning some fun friend activities. Then I helped him narrow down some friend possibilities. He picked M because he was enjoying working with him at the school store. So I've encouraged him to make specific efforts to become M's friend. Each day N would report on how the day went. I knew things were going well when I dropped N off to school late on Tuesday. N had to run in and pay for his lunch, but a field trip bus was already on campus. I waited to make sure N made it back in time. As N got onto the bus and wandered to the back, I noticed that M had saved N a seat -- a sign of a true friend, I think. Then on Thursday, M asked N to call him after school to see if they could get together. N wasn't able to -- but we made sure to follow up with pizza and a movie last night. I'm sure that M is a big reason why N is doing so well right now.

My Son Isn't Sick

N has done so well over the past couple of days. Sometimes when we've gone an extended time period like this, it feels like N isn't sick at all. We've had two completely normal days with a normal child. Last night, as I talked with Dr. J on the phone, I found myself feeling sheepish -- like N really isn't that sick and that I'm just taking advantage of these services for my own reassurances. I had to remind myself of the emotional discouragement and drama that was playing out only a few days ago. I tried to remember the frustration and fatigue. During the first months of the anorexia, I didn't need any reminding. The anorexia took over my son multiple times every day. Now he can go as many as four days with only subtle reminders of the anorexia. Our therapist, Dr. R. said that eventually the anorexia would just fade away. I think it's starting to fade.

A Team!

Finally, I've found some medical support for my son. My friend's search for some resources at our local children's hospital was successful. She found an outpatient clinic for follow-up nutrition. This clinic is managed by a highly rated pediatric MD & Gastroenterologist and supported with nutritionist and dietitians. Each Thursday, they focus the clinic on eating disorders.

The doctor (Dr. J) personally called me tonight to assess my son's needs. He felt like we have turned a corner with the weight gain over the past month -- and that the immediate crisis is over. He was so reassuring that I was doing well with N (so good to hear) and that I was doing all the right things. I'll be setting up appointments for January -- a ways off but better than March (which is what they initially told me). I think we'll visit with a dietitian which will cost us about $125 or more. But Dr. J (this new doctor) felt like it would be important to reinforce to our son what is important in terms of calories and weight goals. We'll also do a medical evaluation which is much needed in my opinion. I think N is doing well medically. But I also think it's important to have an appropriate medical resource for treating the anorexia. Dr. J called the clinic a nutritional home base. I finally feel like we're filling up N's treatment holes.

Dr. J talked about addressing N's stress and anxiety. I know that he has some problems with these things, but I really don't want to medicate him. I feel like it would be far more productive to teach him how to manage that stress and anxiety. I know there are times for medication, but I don't feel like this is the time. I'd like to see us restore his nutrition and weight first.

I was surprised to find out that Dr. J had heard of the Maudsley Method. He's the first one so far. I felt like he completely supported and approved of this method of treatment. He was anxious to restore N to weight and full nutrition.

Stress

N went back to school today. I wasn't here this morning, but my husband handled things so well that N was even on time to school. Yesterday, N got a little math done and a report on rock music finished. That report has been hanging over his head for several weeks now. I could see a lot of relief once he printed it out. It's interesting to me that stress seems to bring out anorexic thoughts and feelings in N.

High Calorie Foods

I'm compiling a list of good high calorie foods. I've gotten some great ideas on Laura Collin's forum for parents of children with anorexia (see link on side). My Sister-In-Law (a registered dietitian) has also shared a few. I intend to add to and edit this post as I find more ideas.

High Calorie Foods:
Shakes (with add ins)
Smoothies
Ice Cream
Muffins (Costco blueberry muffins are 612 calories each)
Cocoa (with add ins) - 450
Pop Tarts - (a package of 2 is 400 calories)
Oatmeal Packets (with add ins)
Cookie Dough

Add Ins:
Ensure (N doesn't really like this)
Carnation Instant Breakfast (cocoa, pancakes, milk, shakes)
Whole Milk (shakes, cocoa, pancakes, creams & sauces)
Half/Half or Cream (like whole milk when possible)
Butter
Cream Cheese
Cheese (though N genuinely hates cheese - so we don't use it)

Staying Home

N is home sick today. He is having problems with intermittent diarrhea and cramps. They started last night so I know it's not just him resisting school.

He begs to stay home often. He always promises he'll get his work done better if he is home. However, he isn't getting too much done here either. I don't think I should send him back to school -- there wouldn't be a bathroom close enough. But he isn't sick enough to just lay around here. So, I'm trying to help him get caught up.

N has made enough progress with his anorexia over the past month, that I've started pushing his studies a little more. Pushing is the wrong word -- really I'm just having him stay after school (if he is late) to try and catch up what he missed that morning. I'm also asking about homework at home now. I'm not making him do it, but I'm asking about it. I haven't been asking about it at all over the past few months. I've known that he was behind, but I also knew that the stress would bring out all the worst of the anorexia. I asked N's therapist about my pushing his studies again. Dr. R's response was that N was probably more fragile than I realized and to proceed slowly and carefully.

I had previously shared my concerns with Dr. R. about getting N's calories up. He brought this topic up again last night. He talked again about making sure that N was progressing to his goal weight adequately, as assessed by a medical practitioner. Which reminded me again that N's medical care is really inadequate. So, this morning I put in a call to our local children's hospital (which is 45 minutes -- or more -- away) hoping to track down a pediatrician that specializes in eating disorders. It's too bad that our regular pediatrician doesn't have the knowledge that we need.

85.1 lbs

Both Sunday and Monday were fine. I weighed N on Sunday. He was up slightly to 85.1 lbs. N wasn't completely on top of things this weekend and I felt like we were walking the edge of the cliff again. He was easily stressed and avoided work/chores in general. I found myself tiptoeing around him a bit. We had Family Home Evening last night with a older single lady who is often lonely. N did really well. When he started to decline the juice and cinnamon rolls, I gave him "the look" and he accepted and was gracious.

This morning, however, N has fallen into his bad morning patterns. He's already 45 minutes late to school and is not showing any signs of trying to get there. He is crying and angry and frustrated. I suggested prayer again. His spirits are a bit better, but he is still moving slowly. He had only eaten part of his breakfast, but has now gone back and finished. I suspect those calories will help.

I still need to get his calories up. We're averaging around 2350 per day. I've used every trick that I can think of. Still, when I add things up at the end of the day, he is always short. That last snack of the day will get him up to 2300 but that is as high as I usually get.

I do think the trajectory of N's progress is still positive. He even said that he doesn't have the anorexic thoughts so much anymore. But then again, I heard many of them again this morning -- especially the "I feel self-conscious."

Scared

Last night was rough! N was really low on calories by the end of the day, so I insisted on a very large evening snack. We were watching a movie and I hoped to distract him while eating. But he refused. By 10:00, he still had not eaten his snack. I had to be very firm. N pushed back and blatantly refused. He hasn't pushed back that hard for a while. In the end, he cried for a while and I hugged him. He kept saying that he was scared -- scared of getting fat, scared of eating so much, scared of no one liking him and scared of the food. I'm glad he was able to face and admit his fears. I asked him to sit by me on the couch so I could hug him while he ate his "scary poptarts." He laughed at my joke and relaxed a little and ultimately, we helped him eat his food.

Improvement

Since yesterday, N has done really well. He volunteered to eat a high-calorie snack during the afternoon. He's also been cheerful and cooperative. He is such a good, sweet boy. I think he really wants to please me -- and is extra sad when I'm frustrated with him (like yesterday). I think at some level, he is trying to make up for the past few days.

A Message

Several days ago, a knock at my front door revealed a neighbor who I see at church and school sometimes. But I was surprised to see her on my front steps. She looked so nervous. She jumped into her explanation that she had felt for some time now, that she needed to tell me something, but had put it off multiple times. Still, the impression had been persistent. She said that God wanted me to know that I was a good mother -- that we were good parents. She talked about watching us and our boys and knowing that they were just good kids. She finished by saying that she also thought I was a good mother -- that we were good parents. She said that she would be happy to have any of her girls marry any of my boys -- and that anything we were struggling with would be okay.

Wow. I can't believe her courage. I immediately called my husband. I think her message had even more of an impact on him than it did on me. Those were just the kind of words that we needed to hear. We so often find ourselves wondering what we did wrong, wondering if we messed N up, wondering if the accelerated program was really the right thing for N. Like my husband said, maybe Heavenly Father wanted us to know that we are okay, that we really are good parents, so he sent us a message.

So often recently, as I've shared our struggles with those that need to know, I see a change come into their eyes. I see them wonder what we did wrong. I can see them thinking, "I didn't think they were bad parents." I know this is because of old ways of thinking of anorexia. I've been asked about N's orientation, whether he has been abused, about control issues, and N's selfishness. I know it's just the way people think of these things. I've tried to take those opportunities to change their thinking. I've tried to talk about current research, chemical changes in the brain, puberty, nutrient & metabolic deficiencies, and food as medicine. Sometimes, though, I don't have the time or opportunity to say these things. Then they leave thinking all these terrible things. It's sometimes a heavy burden. But lately, I've also been able to think about my neighbor's words. And it helps.

Prayer

It was a rough morning again. N was more than an hour late for school. I'm hearing more of the "no one likes me, I'm stupid, I'm fat" recently. He repeated these thing multiple times this morning. He's also claiming that he can't finish his food because his stomach hurts or he is too full. But I won't let him not finish it.

We tried some "calm down" time this morning. That worked for about five minutes. He wouldn't try relaxation at all. I finally got him to go pray. He came back and wanted to know why prayer wasn't working. I asked him if he listened or just talked. He admitted that he was only talking. So he went back to his room. When I went to check on him, N said he felt like he should listen to the things I've been telling him. He also felt like he should play his guitar (I think a good relaxation and distraction technique). So he spent 10 minutes with his guitar and was good to go.

Broken Record

As I reread many of the entries over the past few weeks, they start to read like a broken record. But, that's really how I feel like our lives are right now - a broken record. We live and fight the same battles and issues over and over again, day after day. N has only suffered from anorexia for five, going on six months now. And already the fatigue has set in.

We've had a lot of good days over the past few weeks. I think the bigger picture is that N is progressing slowly. However over the last few days, he has regressed a bit. I feel like we're skirting the edge of the cliff right now. I've given him a few additional choices recently for meals and snacks -- but I think he is exploiting those choices. Each meal or snack comes close to a breakdown. Weight and calories and feeling fat are daily topics all over again. Mostly N doesn't dissolve into those breakdowns, but almost. There have been a few rough moments. He pulls himself out more quickly now -- with some exceptions of course. Usually after a quiet moment of contemplation, he'll start apologizing. And that's a whole different issue that I've already discussed.

Today we've skirted multiple fits that have culminated in a late night and accusations of us "accidentally" increasing his calories each day.

84.4 lbs

I weighed N on Sunday morning. He gained 2 pounds and weighed 84.4 lbs. This is the first real weight gain sinced we started refeeding. I'm thrilled. Though we don't tell N his weight, his automatic assumption is that he is up to weight and that we need to reduce his calories. So he was resistant on Sunday morning and again Sunday night to the continued high amounts of calories. Monday morning was also rough. This morning seemed better. He actually made it to school on time.

Food

N is an hour plus late for school right now. He is paralyzed over choosing a shirt. He is so picky about how they look on him. If the fabric hangs out at all then he freaks out. He'll be fine with wearing some shirts one day and then the next time he hates that shirt. I'm sure it is the anorexia still warping how he looks at himself. He also confessed that he can tell that he is gaining weight and that he feels fat because of all the extra calories. Which, of course, is ironic given that he hasn't even gained a pound since we started refeeding. He has cried now for about 30 minutes. Then he apologized profusely, saying things like, "I suck" or I'm pathetic." I've helped him find positive messages and I've hugged him a lot, but it's not making a difference this morning. He is crying again. I've asked to him to go lay on his bed, do some relaxation and try to calm down (we call it "calm-down time").

I'm struggling to get his calories up. With a lot of effort, I can get his daily total to around 2300. I'm using the tricks that other parents have passed on (adding carnation instant breakfast etc.). Here is a sample menu:

Breakfast
4 large pancakes (made with whole milk) - 350
1 T. syrup -100 (he wouldn't eat this until yesterday)
2 pieces of bacon - 70
1 c. cocoa (with carnation instant breakfast & whole milk) - 430

Snack
PopTart - 200

Lunch
Peanut Butter Roll - 250
Orange - 30
1 c. Juice - 100

Snack
1 mini candy bar /package of starburst – 300

Dinner
2 c. Wild Rice Soup (made with half and half) - 340
1/2 apple - 60
Carrots - 50
1 c. of Juice – 100

Snack
1 cup of Breyers Vanilla ice cream - 300

Total - 2680 Calories

The problem is that he is stuffed (particularly at breakfast and dinner). I would be too! He is eating a ton of food. Yet, 2680 calories is a good day. Most days, I struggle to even get him up to 2300. Some mornings I'll make him a high calorie shake (that replaces the pancakes) or a bowl with two packets of oatmeal and instant breakfast. I'm going to rotate bagels and muffins into the breakfast/lunch mix. I just can't make him eat more of everything. Somehow I need to find better ways to make calorie dense foods.

Sick

I've been much more diligent over the past two days about watching N's calories. Sure enough, his moods and obsessions have responded accordingly.

We've had a terrible cold going through our family. It's a cold with the works: fever, aches, coughing and fatigue. N and his brother have both been feeling it. They've been lethargic and cranky. N, however, has continued to complain about a stomach ache. He doesn't want to eat very much. I've wondered if that, in part, is him taking advantage of the situation. And I feel like I can't let him eat less. I've seen what happens when we back off on his caloric load even a little bit. I don't either want to aggravate a sick stomach. So, I've insisted that he eat. He's been a little more reluctant. But after I made it clear that eating less wasn't an option even with a stomach ache, he responded. I've tried to choose foods that are a little more bland and less heavy. For example, I let him have left-over wild-rice soup last night instead of stuffed shells with tomato sauce. I've also been suggesting hot cocoa -- but for some reason that hasn't appealed to him.

Counting Calories

N has been doing so well over the past 2 weeks. I'll admit that I haven't been as exact at counting all of his calories. I could tell he was getting a good amount of food each day. But now I know better. Last night, N began to spiral. I could tell that he was struggling as soon as I picked him up from school. By the night's end, I had to push to get enough calories in him. This morning, he cried again. It took a long hour to get him to school. He was feeling so self conscious. I've upped his calories again and am diligently keeping track -- but I suspect it will take a day or two to have his mood swing back. I think that the return to school (after a long stress-free Thanksgiving break) also affected him.

Weigh-In

I weighed N this morning: 82.1 lbs.

This is actually down .1 lb from last week. I've heard other parents talk about this happening (loosing weight even though calories are significantly raised). I wonder how it's possible, though. He has eaten so well this week!

He had a great morning. He was only a few minutes late for church. There were not any delays over clothing (he did have a new white shirt).


Note: (added in 2011)  What I learned later is that kids recovering from anorexia typically have a hypermetabolism.  They need double or even triple the amount of calories normal for other kids just to maintain their weight. 

Thanksgiving

I am so thankful that N has made so much progress. We'll weigh him tomorrow, so I don't know exactly where he is. But he's had a great week.

He met with Dr. R. on Wednesday. The doctor was so pleased with N's progress that we've shifted our appointments to every other week. Dr. R. said to continue with all that we're doing.

The anorexia isn't gone. N will argue and resist when his meal has a lot of calories. But there hasn't been any yelling or crying these past few days. He'll protest and then quickly relent. I'm sure that no school and no scouts have helped keep his stress down. Also, his dad has been able to take these days off. There has been a lot of support and love. Hopefully, this trajectory will carry into next week as the pressures start up again.

More Of The Same

N continues to do well. It seems like each day he has one or two moments where his anorexia resurfaces. Those moments seem to happen around meals -- especially with new menu items or in the morning (dressing time) and evening (when he is tired). Those moments, though, seem to get farther between, shorter, and less severe. I hope that continues. Often he will yell and get mad, but will regret it and apologize pretty quickly.

Pancakes

N had a great time camping! I packed him full of calories before he left. Then on Saturday, I made up any deficits. According to both N and his scout leader, he ate well.

N was tired of course from late night camping. Sunday morning was tough. I was ready to go to church (announcing all throughout the morning how long until church) and he hadn't even started getting ready. He cried and I hugged him for several minutes. Then I told him to do some relaxation and say a prayer. He did and came to church quite late. But his attitude was a lot better throughout the rest of the day. We had Quiche for dinner. N doesn't like it, but he ate it without complaining. He also had two treats at an evening church meeting.

N went to bed late last night. I knew that it would affect him this morning. But it wasn't too bad. He's tired of shakes. I was willing to substitute pancakes this morning (4 with syrup). He wanted to negotiate the syrup. I think the idea of syrup being pure sugar really scares him. So, his Dad stepped in and compromised cherry preserves instead. I was worried that it would turn into a huge meltdown, but N jumped up and got ready for school. With a lot of cheerleading on my part, he made it to school only a few minutes late.

Tests

All of N's test were normal. So, he got to camping. I'm anxious to hear how everything went.

It was good to have a nice quiet night here at home. We missed N -- but it is always good to have some moments away from the emotional drama. T took J out for ice cream. I'm glad they had a chance to have the one-on-one time. It's been especially hard on J these past few months.

Timing

The timing was terrible this morning. N wants to go camping tonight. It's also the last day in the term to turn in his math assignments (which are done, but just need to be recorded). I also added a generic version of "ensure" to N's shake this morning (of which he was aware). So, it all added up to another meltdown this morning. He spent an hour or more crying and refusing to go to school. I really think the extra calories in the shake were at the root of the issue. In the end, he changed his shirt to one that makes him look "skinny" and then he was fine. I'm sure that he was also motivated by the knowledge that there would be no camping if he didn't go to school.

N has been spending extra time after school catching up on his assignments. I like having him stay after because it serves as a natural consequence for being late -- and it increases his interaction with other students (who are still in class once he is done with school). I know that he didn't want to stay after today because he wanted to pack. But, again I felt like it was a good natural consequence (and he will still have plenty of time to pack). N really functions fine at school. He has neglected his studies and his grades have gone down. I'm not worried about either of those things. I am concerned, however, about his developing bad habits. And when he can, I think he should still be responsible as much as is reasonable. I know that some kids with anorexia can't handle school at all and need to be pulled out. I think, though, that he needs to be there. School truly serves as a distraction for him.

N and his Dad saw the therapist last night. I got the recap later on -- but there were some interesting comments. 1 - Dr. R. was surprised that we weren't getting simultaneous medical care from N's pediatrician. There have been 2 or 3 other things that Dr. R. had also taken for granted. I need to make sure I mention everything to him so this doesn't happen again. 2 - I was surprised that Dr. R. was not aware of the Maudsley Approach. I took him the summary from the http://www.maudsleyparents.org/whatismaudsley.html website. He browsed the article and said that it was credible research. For the most part, the Maudsley Approach is similar to the approach that Dr. R. advocates anyway. He said if it is working then keep doing it. 3 - He said it was okay for N to go camping (just overnight: dinner and breakfast). But he said it was important to get a medical evaluation today (especially since he hasn't been seeing his pediatrician regularly). So, we've made an appointment. His scout leader is aware of the anorexia. He'll have instructions to call us if N isn't eating (and we'll go get him). We won't make the scout leader responsible for making N eat. So, I'll pump N full of calories before and after. N has been good about eating away from home (but a little conservatively) so I really think this can work.

Food

N had another good day.

I am struggling to find ways to get more calories into his diet. N is not excited about the addition of ensure to his morning shake. He has seen the cans in the fridge. He didn't melt down about it, but I haven't actually used the stuff yet. I'm not sure where else to add calories. I've thought about adding an evening shake -- but I would get so tired of shakes if I were having two a day.

Hope

N is still doing well. There have been several "blips" everyday. But they are shorter and less severe. He seems to get control of himself faster now. His Dad had been out of town over the weekend. He said that the difference in N was amazing! N has color in his cheeks and has been more himself over the past few days. He has even been seen smiling.

I attribute the change to both the increased calories and the limited choices. I hadn't realized how paralized he had become about simple choices. He spent almost 30 minutes yesterday at the supermarket trying to choose a candy bar. His calorie intake is still only in the 1900 to 2500 range. I'm trying to go "low and slow" to avoid the refeeding syndrome.

I have some hope for the first time since he got sick.

Calories

Last night, after a pretty good day for N. He started rattling on about how many calories he had eaten. He was throwing numbers around like 3000 and 3500. I've been paying attention to his caloric intake, generally, but had not been adding every little thing -- and I certainly didn't think he was even in the area of 3000 calories. So, we sat down and added things up from his day. I was so surprised to find out that he overestimated his calories significantly in almost every area. The reality was that he had barely had 1900 calories -- which is only enough to maintain his weight. He has "allowed" himself to eat up to 1800 calories with not a lot of resistance. But he has been fooling himself. I've got to be extra dilligent now about counting the calories for him.

N has had a good 24 hours. His anorexic obsessions/thoughts have still been there -- but are much more muted. I can tell he feels better (and that's just with 1900 calories). I've limited his food choices to two per meal and I don't negotiate. That's already eliminated half of the meltdowns. N had a little blip this morning when choosing his clothes (another example of too many choices right now). I think I will have him set his clothes out the night before. He had a great breakfast (shake, sausages, toast). It's the first time I've seen him really full in a long time.

New Low

We did our weekly weigh-in this morning. N reached a new low: 76.5 lbs.

I told him how much weight he had lost. He was all geared up for a battle -- but once he knew how much weight he had lost, there was no battle and he ate fine. I told him his weight because I knew he would eat.

Yesterday was rough, but he definitely is starting to get the idea about the new ground rules. For lunch today, I offered two choices. He wanted to argue -- but I reminded him there were no other choices or negotiations -- and he responded. It's been hard to know how much to limit his choices.

Note: (Added in 2009) This is the day that I knew we had to completely change our approach. When I discovered how low his weight had fallen, I was desperate and afraid for his life. I was willing to try something new. So on this date, I started applying the principles that I had been learning from the other parents at aroundthedinnertable.org based on the Maudsley Method.

Starting with Sunday evening dinner, I gave him a plate full of food (using the "magic plate" concept - which means I chose the food and the quantities) and required that he eat it. I told him that we wouldn't be going anywhere or doing anything until he ate.  That first night was really tough. He sat at his chair much past dinner time crying, getting angry, and refusing to eat until he realized that I was completely serious. Then he started eating -- but just a bite at a time.  It was a long night, but he ate more than he'd had in a long while.  The difference was almost immediate.

Saturday

This morning was terrible. I made pancakes thinking I could "sneak" some calories/fat into them. N freaked out as soon as I said I had made pancakes. He didn't see me make them and I wouldn't let him see the mix or tell him which recipe I used. Pair this with the fact that he had a scout activity that he didn't want to go to. We were in utter meltdown for 45 minutes. Maybe I shouldn't have forced him to go to the scout activity. But I felt like he needed to get out and do things with other kids. Anyway, I did get him out the door (20 minutes late and with breakfast in hand). I gave instructions to the boys to make sure he finished his breakfast. He'll hate eating in front of them -- but he'll hate them bugging him worse.

N usually does okay as long as his menu is predictable (i.e. he knows the calories). Any choices are hard. Even a choice of toast or cereal sends him into space. For some reason, he is a little more flexible with dinner -- but has started to be less so. We worked out a compromise with Dr. R. to help with the battles at dinner. We work out our month's menu together. I don't mind his choosing some of the main courses -- but I get to put the quantity in front of him. Dr. R. told us that N would become more picky with time, but not to let him do that. [In fact, at this inpatient facility they don't "allow" people to be vegetarians. He said that is a common thing for people with anorexia to decide that they are vegetarian.]

Also, I'm realizing that I've got to up his calories. He's only getting enough right now to barely maintain his weight. He's okay with most of what he eats because he knows that he continues to "maintain." I think bigger battles are coming as I increase the calories and the weight starts to come back on. So, we probably haven't even experienced the worse yet.

N has a chance to take a test today to be placed in an accelerated 7th grade program. He wanted to take the test -- but lately started freaking out about it. I have to admit that I would like him to participate. This is because for so many years I saw him bored in regular classrooms. He was finally challenged when we moved him into an accelerated class (which he is still in). Now, the least little thing makes him completely stressed. We've discontinued every other extracurricular activity including sports and guitar. All he has left is scouts and school. I'm not pushing achievement in either right now. Still, I wonder if he'll get better by next year and then be bored in school again. Is it worth the stress the test would put on him today? Ultimately I guess I'll let him decide.

Family Dynamics

I had no idea, until today, that parents were once blamed for children's anorexia.

I've been looking for a support forum and finally found one today. The reading was so interesting -- and I can tell I have so much to learn. I posted this blog link on that support forum and I've had many wonderful messages of support today. I didn't realize, however, that "family dynamics" was such a hot topic. I probably need to clarify some of my previous posts. I have been the one exploring my own possible roll in the development of my son's anorexia (based on my reading of "Skinny Boy"). Dr. R. has never suggested that I (or our family dynamics) have played any role in N's development of anorexia. We are treating the anorexia as a disease with food as the medicine. Our main objective right now is to get N to eat.

I've learned some about the Maudsley Method. From what little I've read, I think that it is pretty similar to what Dr. R. is teaching & promoting. We've also talked a lot about "Intuitive Eating" as a new way for N to approach food. I'm not sure how these two things work together but I intend to do a lot of reading and find out the best way to help N.

A Change Of Pace

Two steps forward and one step back.

N's aunt M & uncle J came to visit over the weekend. Though, N did seem to struggle at moments, he didn't let it consume him. He resolved things rather quickly and did well. Once they left, N did allow his emotions to show more but overall seemed to do better.

Tuesday morning, T & N went to a local school district camp for the night. T said it was a good experience and that N did well overall. T did say the N has no friends -- not even a group to hang out with.

Yesterday night and this morning have been back to the same old issues all over again. I'm concerned because I feel like N is hijacking our family. He is becoming more willful and regularly refuses to eat, to do chores, to do homework -- whatever. We've given him some allowances, but I feel like N is exploiting that space. I'm tired of tiptoeing around him -- and I feel like he needs to follow our family rules. I know that I can't make him do anything -- but I think there need to be consequences when he is disrespectful and disobedient. Even consequenses are hard. In the past, we would not allow him to have friends, or take away media time. Now, we desperately need him to have friends. Even now, he comes home and won't play because he just doesn't get to his homework. If I push his "homework time" to the end of the day, then it will create even more problems with bedtime. And his bedtime is something we are still working on.

Today I feel tired. I'm tired of the constant emotional drama. This disease is taking a toll on me and our whole family.

Family Fast

(Post added in 2009)

It was this Sunday that we held a special prayer and fast for N. Only limited family members were aware of his illness, but we all joined together on this day in hopes of finding help for him.

It is remarkable to me now, as I look back, to realize that only four days after this prayer & fast, I found the resources that I needed to ultimately help him get better.

The Doctor Returns

It has been 2 1/2 weeks since we met with Dr. R. Yesterday we met with him at the end of the day (instead of our typical early morning time). It was a good visit. We talked about the negative messages vs. positive messages. Dr. R stated that he hadn't realized that N was doing that or he would have given us some instruction. He confirmed that I should continue what I've been doing (making positive messages out of negative ones).

I also asked about my concerns about my pushing N and not allowing him to have all of his own consequences. Interstingly, he said the parenting styles usually associated with anorexia are very different from binging -- and are usually a more controlling parenting style. However, he had not perceived me as particularly controlling and hadn't been concerned. I was wondering if I should continue changing my approach (letting the boys have more ownership over completing their own school work and/or assignments) or if N was too fragile right now. Dr. R suggested it was like a chicken/egg relationship. It could help and it could hurt. My best parent instincts right now tell me to continue giving the boys the ownership. I felt strongly at the beginning of this school year that I had never allowed to boys to fail. And until they had that experience they wouldn't decide to take care of their problems themselves. So, I had been making these sorts of changes even before reading Gary Gahl's book. I think we've had a few bumps -- but in the end N and even J are taking more responsibility.

T & I determined that N needed to get more sleep. He has been doing this cyclical thing where he stays up late (usually with much drama and crying), finally goes to bed when we do, is too tired to get up in the morning, goes to school 30 minutes late, is tired at the end of the day -- and the drama starts all over. So, we're trying to have him go to bed by 9:00 every night (we were trying to do this before, but we'd start at 8:30). We'll start the process at 7:00 pm if we have to. We almost have to plan on an hour of talking before N will go to bed.

Last night as we talked (for the typical hour), N was rehashing all the calorie/weight/good-bad food stuff. All of a sudden I realized that we were supposed to be distracting him from all those topics -- not enabling him or being sucked into his obsession. So, I informed him that we would talk about anything he wanted, but that we weren't going to help him obsess over calories and foods by talking about it. T said it really well -- that it is our job to worry about the calories and such (and N doesn't need to worry about it).

So, he was in bed by 9:00 -- but didn't stop talking/obsessing until 9:40. However, he did get to school on time this morning (the first time in a long time). He told me that he wasn't going to go to school because he was too self-conscious. But I drew the line and said that staying home was not an option. Eventually he relented. We did positive messages all the way to school.

A friend this morning read the lyrics of a song that her daughter wrote for a competition. J & N have been friends since before they started kindergarten. The lyrics really seem to talk about all the changes in N -- though J insists that they aren't about him at all. They talk about someone who used to be happy being sad and pulling away. J doesn't know about N's condition -- but she must see the changes happening and feel sad for him.

Bedtime

We didn't make the boards like I planned. N reminded me early on that we had to carve our pumpkins. So we did and ate cinnamon rolls.

N did okay until the late evening. He was so tired and emotional. He gets to that point and struggles and wants to talk. I think, though, that it would be better if he went to bed. We've been trying for months to get him into bed by 9:00 at the latest. I think he purposely tries to stay up -- and in fact, won't go to bed until we do. Not only is this bad for him physically and emotionally, but it is eating up the last remnants of any couple time we've had. We finally persuaded him to go to bed last night (with some talking -- but not the hours he was gearing up for). There has to be a balance.

I talked to J about N this morning while going to the dentist. I've been so concerned that he has been getting neglected. He did say that sometimes he feels like N is getting something that he isn't getting -- but he couldn't put his finger on it. We talked about it and agreed to check in with each other to make sure that J is getting the attention that he needs.

2 Pounds

We had a rough weekend. N struggled through each day as though we've never made any progress. I've been concerned that with the relaxed structure of weekend eating, N wasn't getting enough calories. So I weighed him on Sunday morning. He had lost 2 more pounds. He is now down to 80 pounds.

My effort, then, to feed him more combined with his elevated struggles made for a rough Sunday. He said he feels particularly self-concious at church (possibly intensified by the fact that he was giving a talk in primary). We spent both Saturday night and Sunday night -- probably 3 to 4 hours total -- helping him come to some peace before he slept.

T gave him a priesthood blessing. I think that was good both for T and N.

I've been trying to help N use positive talk whenever he starts to hear the negative voice of anorexia. He'll make a disparaging comment -- and then I'll encourage/help him to turn it around to a truthful/positive thought. I noticed that Gary Gahl, as I read in his book, "Skinny Boy," was able to do this as he started to really get better. I hope that N can learn to insert his positive thinking comments to fight off the guilt and lack of self-worth.

I'm thinking about buying some magnetic boards that the boys can paint tonight for FHE. I thought that maybe I could hang all the good things that we can think of about N on the board. Maybe that would help him get through some of his hard times.

Skinny Boy

Nothing really eventful yesterday. We did get our flu shots -- and as usual, the boys did great. N went to see his pediatrician and was given some prevacid to help with his stressed stomach. For a long time I thought he had a touch of the stomach flu -- but as the stomach pains persisted and became acute when we was having a fit -- I thought it could be "hyperacidity" (doctor's word not mine).

I just finished reading "Skinny Boy" by Gary A. Grahl. It was good/helpful to see the author's perspective in many ways. This segment was at the end of the book. I'm afraid that I'm guilty of a lot of these things (1, 3, 5 and 7). But they are also many of the things that I'm trying to change.

"If you're the parent of someone with an eating disorder: 1) What expectations do I have for my (son)? Are they realistic. or am I trying to vicariously live out what I want through my son? 2) Do I feel at ease expressing genuine emotion in my son's presence? 3) Am I okay with granting my (son) permission to "stretch his wings," or do I feel the need to protect him like a mother bird? 4) When was the last time I hugged my son and told him I'm proud of him (not for what he's accomplished but for who he is)? 5) Have you provided your (son) with support and encouragement while at the same time allowing him to experience the consequences of his own decisions (unless safety is in imminent danger)? 6) How have I embraced his unique personality without trying to break him like a wild horse? 7) How much do I take responsibility for my (son), constantly attempting to control how he thinks, feels, and acts, instead being responsible to him?"

Note (added in 2011) - Reading this book was the first exposure that I had to the old, very-inaccurate idea that parents' control issues cause anorexia.  I have since come to understand that anorexia is a brain disorder and is not about control issues at all.  Finding the balance for giving a growing child independence is an issue for every family regardless of whether that child has an eating disorder.

Confessions

Yesterday was rough again. N struggled through the day -- and was 30 minutes late again. His primary teacher called me during the day while N was home. I stepped out of the house and sat in my car to talk (mostly because I couldn't hear). N asked who had called and why. We've been honest with him about those who know/show concern in hopes that he would realize how much people love him and care about him. N then admitted that he liked all the attention he was getting. He said that people had never really showed they cared in these ways before. This confession really concerned me. We've got to make sure that we are not reinforcing the anorexia -- but instead are rallying around him in different ways. I guess we've got to reinforce him most when the anorexia isn't the main issue -- to show him all the love/attention he is craving but not have it associated with or reinforcing his eating disorder.

Also, last night N started having loose bowels. He just doesn't have enough weight to get sick. I'm afraid he would end up in the hospital.

This morning, it all started over a gogurt. I've been letting him substitute a gogurt for his milk. He has been cutting them in half. This morning, though, I didn't have any that were frozen. So I insisted that he have the whole thing (a good change regardless because an entire gogurt is not even equal to 1 c. of milk -- in terms of calories etc.). He threw a fit again - crying and screaming and kicking. The most disturbing thing was his comment that I would be making him be hungry later if I made him eat the gogurt now. He then told me that he wouldn't eat as much during the day to make up for the extra gogurt. I insisted on the gogurt -- thinking that he would eventually adjust to having that much and wouldn't restrict his later eating to compensate (I hope!).

He is wearing a white t-shirt and a pair of Old Navy "skinny" jeans to school every day. I bought him a huge package of t-shirts so he wouldn't be stinky/dirty -- but he really could use some color/variety. He said that it is the fit he likes. I'll have to see if I can find some colored undershirt/t-shirts.

Decisions

It's never simple, is it? N had, really, a great week. Yesterday, though, it became very apparent that it had all really been smoke and mirrors. He had been struggling almost as much -- but had been hiding it from us. We want him to have good days -- days where he feels good about himself. But we don't want him to hold it all in either. When you are judging behaviors by outward manifestation, how can you possibly know what he is really thinking/feeling?

I took him to pick out his earned funkey. I made the mistake of offering him the cash instead. The choice was paralyzing! He spent an hour obsessing and crying. I finally had to make the decision for him. Then he was so ridden with guilt. He went on and on about how we shouldn't have to do all of this for him -- that we shouldn't have to give him rewards (and insisted that he wouldn't take them). The evening just dissolved from there. He spent most of the afternoon curled up on his bed. He wouldn't do his homework. He wouldn't eat his afternoon snack. By the time we hit family night he was a wreck.

I tried not to make N make any decisions, so I made the call for our activity. N had really wanted cookies earlier, so I decided we would make cookies and then each add our own combinantion of chips. N really wanted to help cook, but wasn't done with his homework so I started the dough. By the time I was done, N was crying and screaming. T took him to his room and they spent about an hour talking before N was calm.

We found out several things:
1) N has still been counting calories. He has been using the cookbooks to find out the calories. The reason my dough-making was so paralyzing was because I doubled the recipe and was planning to change the size of my cookies (thus he could not figure out the amount of calories in each cookie).
2) He has been restricting his calories during the morning/day so he can have more at night.
3) He has not been listening to his body and has never really felt full.
4) He is so down on himself because we are having to do so much to help him. T helped him understand that when anyone is sick, we take them to the doctor and get medicine and do whatever we need to do to help them get better. Hopefully, that helped him understand -- but he is so completely riddled with guilt.

On a different note. Our Bishop contacted T yesterday wanting to talk about our "oldest son." So T contacted him. N's primary teacher had contacted the Bishop, concerned about N -- thinking he might have an eating disorder. The Bishop told him that he was pretty sure that N was too young. Bishop was very surprised when T confirmed that N did indeed have an eating disorder. This morning I contacted N's primary teacher. I let him know how glad we were that he was concerned about N enough to contact the Bishop. [At various points, we've also been contacted by N's scout leader and his school teacher.] I also gave him some basic instructions:
1) Give N authentic praise.
2) Let N choose to NOT have treats. Don't let the boys make a big deal about this.
3) Change the subject when the boys start calling people fat or skinny or whatever.
4) When they teach the "Word of Wisdom" call me -- so I can prep them not to label foods good and bad. And then they can use the word "healthy" carefully.

We've really tried to keep things under wraps -- not because it is secret -- but because N needs to work out things on his own terms without everyone in the community looking over his shoulder. However, the list of those who know just grows. I'm not sure how much we can contain it.

We went to a local corn maze for a delayed FHE activity on Tuesday night. N had fish and chips for dinner as part of this outing. Afterwards, N had scouts. He put on his scout shirt and flipped out. I spent 20 minutes convincing him that he looked great (he even took me to his room and showed me in his mirror how he looked "fat"). I finally got him to go -- just to discover that scouts had been cancelled.

Weekend

N finally earned his third day on Saturday. He argued that Friday should have been counted, but he threw a fit and argued about his food on Friday morning. I want to reinforce good days -- but help him to recognize things that are still problems. I need to determine a new reinforcement. It was surprising how much a $6 toy motivated him. Once he told me that he thought he could be "all better" if I got him a wii. What? Is that possible? Could it be that simple? If it was, I would offer it in a second.

Sunday wasn't quite as good. He really doesn't like his church clothes and spent a lot of time fixated on finding an old sweater to wear over his shirt. After church, he just wants to cook. But he never actually makes anything. He just spends hour reading over cookbooks, trying to find a recipe. I probably shouldn't let him do this. But if he would make cookies and eat them, that would be fantastic.

He let himself have some treats over the weekend. He has stopped limiting them. However, after he eats much, he still feels so guilty and "self-conscious." Many nights he'll cry because of what he did or didn't do with food that day. I've taught him some relaxation tricks (like imagining a ball rolling through all of the parts of your body, slow breathing, or envisioning Christmas morning). I usually have to remind him to do those things to help him fall asleep.

I've got to watch him. I've been serving him breakfast -- but he is so into predictable foods (where he knows the calories, I think) that I've let him serve himself for several days. However, I realized that he was going to walk about of the kitchen have only eating a 1/2 gogurt. I insisted on cheerios and an apple. He is late almost every day to school so I had to take his brother to school before he was ready. But when he came to the car, he had only eaten 1/2 cup of cheerios (and the 1/2 apple). I've always required a full cup of cheerios -- that makes me wonder if he is fudging other requirements. I'm pretty sure that he never lies to me -- but maybe he just conveniently "forgets."

I'm also wondering about bullemia. I really don't think this is a problem. My husband asked how N would even know about it. On the insurance questionaire that N helped me fill out, there was a question about throwing up. N saw it and said he didn't do that. But we didn't talk about it after. If I had known that question was there, I would have never let N see the paper. N has been locking himself into the bathrooms lately. Twice he triple-locked himself in to the master bath (toilet, bathroom, bedroom locks). Last night, my husband went to listen (N went to the bathroom right after dinner). He said it did sound like N was really going to the bathroom. I'll just have to watch him carefully. I don't want to ask about it out-right. I worry that it would just give him ideas. Maybe that's naive.

Dr. R

On October 4, we finally met Dr. R. We really like him a lot. We've met with him three different times so far.

N's weight loss has leveled off. He still fluctuates anywhere from 81 to 84. The weight loss finally stopped once Dr. R got involved. Dr. R said that N's case is severe. However, we have duration working in our favor. Because N has only been struggling for about 4 months, habits are not deeply entrenched. Hopefully this means that recovery can be faster.

Here are some things that he has us doing:
*Do everything to help N understand his self-worth.
*I fix N's breakfast and dinner.
*3 mandatory meals and 3 mandatory snacks.
*I don't fuss over "healthy" foods -- calories and survival are key right now.
*We've worked out a reward system. Right now, if N can have 3 good days without obsessing then I will buy him a funkey.
*Emphasize eat when you are hungry, stop when you are full.
*Don't let N count calories.
*Externalization - anorexia is the enemy.
*Distraction - during/after/before eating so N doesn't obsess
*Tool Box: Things to do when you feel like anorexia is getting to you (talk, pray, write, distract).

N has had two good days this week. This is huge! I think he has had a total of 4 good days since late September. However, he got a new retainer yesterday and is having a hard time eating. We talked him into a shake last night -- instead of the spaghetti. He agreed but is having a bad day today because of it. Two steps forward and one step back -- that seems to be how it always goes.

Log

[This first paragraph was added on June 26, 2008:]
I found this log as we cleaned out the car to drive to our family reunion in June of 2008. It's amazing to reread these notes and realize how far we've come. These notes were made before we ever saw a therapist and months before we discovered Maudsley. I'm also amazed at my mother's instincts. So much of what I thought, ended up being exactly what N needed. But, I was still trying to "back off" and wasn't listening to those instincts.

I created this eating/behavior log in anticipation of meeting with the therapist for the first time.


Wednesday, September 24, 2007
Breakfast
2 med buckwheat pancakes
1/2 banana
1 c. milk
Spent 15 min. debating about normal vs. buckwheat pancakes. Concerned about caloric difference. Which one is "healthier"?
Elapsed time 30 min +.

Lunch
(Didn't eat school lunch - says going to eat at home)
Start 1:30
3 Strawberries
1 c. milk
1/2 microwave pizza (minus cheese)
Had a 30 minute discussion on what to eat for lunch. Before he would eat anything I had to add up calories for him. [I indulge about counting calories because if I do, then he'll eat as much as twice as much compared to when we wouldn't let him count.]
(Total calories needed: 2200, minus breakfast, minus biggest total possible "Family Home Evening" treat - still has 1400 to go).
Agreed to have micro pizza. I left package out - while it was cooking he saw calories on label. Is curled up on floor crying that it's too many calories. Saying, "I hate this." Came & got a hug. Trying to negotiate for a wheat bread stick with peanut butter. I say fine and remind him about his goal to eat "more." 15 minutes later, still on the floor. Cuts pizza in half. Removes cheese and pepperoni. I remind of need for protein - argues and agrees to eat pepperoni, but not cheese. Drinks milk without problem. Apologizes.

My thoughts:
I think sometimes he would like me to "make" him eat things. I think giving him a choice makes his dilema longer. Also, he ate the strawberries first. After 15-20 min., he is more "rational." I think the hungrier he is, the harder it is.

End of eating: 2:40 p.m.
Elapsed time: 1 hour.

Snack
1 wheat breadstick

N's Comments:
"I think that being obsessed really sucks right about now. I get so hungry that I act pathetic and can only think about calories and how terrible something is for me. I don't even care how much I want to eat something, all I care about is how bad it is for me. I also say something is bad for me when it's just normal food. You know what, I even think I might secretly be trying to land a couple hundred calories short every day. Stupid or what? I do't really have a problem with only eating treats on Monday nights, but it's really stupid of me to be shunning normal food. I guess I keep doing this because I don't feel self-conscious any more at school and that gives me a feel of relief and freedom. But I've gone into the extremes."

My comments:
N wrote his log (above) - said maybe he shouldn't try to cheat those couple hundred calories. Said - What about a snack? Will I overeat? I agreed that I wouldn't let him. He eagerly ate it.

Dinner
1 c. pasta
some tomato sauce
1 pickle
N made/chose the pasta. I had his plate made between football stuff. He only called into question the amount of sauce we put on.

EXERCISE
1 hour of football practice
recess

Family Home Evening Snack
2 cookies
We told N several months ago that he was not allowed to opt out of the FHE snack. Tonight was his turn to choose it. He carefully planned and chose the treat with the fewest calories. No guilt afterwards! In the past he has "punished" himself the next day. I don't think he will this time.


Thursday, September 25, 2007
Breakfast
2 buckwheat pancakes, no syrup
1/2 banana
1 c. milk
No problems this morning. Was a moment's hesitation about pancake size - "this isn't a medium pancake." Also a referral to his "old fat" self that ate treats all the time. I asked if I was the one that told him he had been eating too many treats - "yes." But you weren't fat. Needed a reassurance that last night was only "1" treat. I'm sure that's because I said treat(s) are okay to have - it's only a problem when you have 5 or 6 each day. On time to school - said it was because he knew what he would eat for breakfast, chose school lunch and knew what he would wear.

Lunch
Pasta
1 glass milk
1/2 pickle
1/2 c. grapes
Ate only pasta that was served at school. Drank milk, ate pickle and fruit here at home. Dinner portion of chicken taco salad 1 glass milk No problems - except he picked out tortilla strips. We didn't comment.

Scout Activity
His scout group went for ice cream. He said he would not eat anything per our contract (is in our contract that we won't "make" him eat treats except FHE). Apparently, it was a big scene. I was not here at his return - but discussion with Dad yielded that he likes the "self control." Dad said he prays every night that N won't hurt his body anymore. Every day he is so far under his calories.

Snack
1/2 banana

N's Comments:
"Breakfast - I did refer to my "old" self and did need reassuring, but I didn't want to eat 2 treats last night. I think I might be comfortable eating Monday-night treats. No punishments this time. Yeah!!!!!! Lunch - Not much of a problem."


Friday, September 26, 2007
Breakfast
Elapsed time 1 hour + 15 minutes.
Not quite this bad because he took a few minutes to get out of bed.
1 lg. pancake
1/2 banana
1 c. milk
Woke up at 7:00 - is 7:56 and he is just starting to get dressed. Apologizes after hearing me cancel my 8:00 walking and gets going. Has been laying on floor crying, paralyzed by the pancakes being bigger than "medium" sized. I suggest eating one large and then another half - but he won't do it. Finally eats. I accidentally pour him some of his brother's whole milk. He drinks it and then freaks out. Cries for 5 minutes. Next issue - What to have for lunch? 3 choices: Hamburger, Potato bar (which he loves) or home lunch PB & J. Takes 15 minutes to decide. I finally have to say you have 2 minutes to decide or I'll decide for you. Takes up to last minute. Decides peanut butter and jelly. Cries because I put in too many grapes.

N's Comments:
"I absolutely hate whole milk. It's a nightmare when I drink it. Potatoes are stuffed with starch! A handful of M&M's would be healthier. I was pretty stressed by then. I think I got up on the wrong side of the bed."

Lunch
1/2 PB&J sandwich
1/2 c. grapes
1/2 pickle
1 c. milk

N's Comments:
"I was pretty hungry by lunch time. I hadn't gotten down to the lunch room and I was already eating my sandwich. Yum. That was a darn good sandwich. The grapes weren't half bad either. Yum, Yum, Yum. I don't think I will eat a snack. I might."

Dinner
Cheesy Chicken with rice
1 c. milk
4 strawberries
corn

N's Comments:
"No complaints except for the rice because he hates cheese."


Monday, October 1, 2007
N has done extrememly well the past few days, as long as his meals are completely predictable. He has his standard 2 large pancakes/fruit/milk for breakfast, pb&j sandwich/fruit/veggie/milk for lunch and prrotests, but usually eats what I serve for dinner. Still talks about it tons. Did eat a granola bar on Saturday and Sunday. Also had 2 cookies for Family Home Evening - didn't cause any problems. I weighed him. He hasn't gained any weight over the past week, but I won't let him see what he weighs or weigh himself. Also, I've continued to let him add up calories. At least he tries to eat "enough" that way.

Breakfast
1 c. cheerios
1 c. milk
1/2 apple
Small "fit" about size of pancakes (not medium) that I made yesterday. I told him that he could make them next time.

N's Comments:
"Enjoyed cheerios."

Lunch
Granola Bar

Dinner
Pizza
Scout leader talked to N about needing to eat in order to participate in scout activities.


Tuesday, October 2, 2007
Breakfast
1 c. cheerios
1 c. milk
1/2 apple

Lunch
3/4 pb&j sandwich
1 granola bar

Snack
After coming home, ate 1/2 apple, 1/2 pickle. I insist on carrots, strawberries before football. He must have had a bad day, somehow that was enough for a fit. I was not checking - and he went to football without eating the strawberries.

Had Parent-Teacher conferences. Teacher asked if N was sick, tired or sad. Said seemed all of those things.

N thinks he is cured because he didn't lose any weight.

*N is doing "extra" exercise to burn off anything that he eats. He'll eat and then want to go running. Once, he even did laps around the church to burn off a meal.


Thursday, October 4, 2007
Breakfast
1 c. cheerios
-1 c. milk- 102
-1/2 banana - 53

Lunch
– Popcorn chicken

Dinner
– 1 wheat pancake
- 3 pieces of bacon
- Small square of quiche
- ½ banana
- 1 c. milk - 102
Was difficult to not count calories. Cried for 90 minutes. Talked about stress of football and concerns about relatives thinking he was fat. He had stress stomach pains. We kept him home.


Friday, October 5, 2007
Breakfast
- 1 c. cheerios
- 1 c. milk - 102
- ½ banana (wouldn’t have a small banana, it had to be a ½ banana)
Ate granola bar before he left for school because he was hungry (said he was “borrowing” from lunch).

Lunch

Snack
– 6 saltines

Dinner
– Mandarine Chicken
-1/4 c. green peas
-1/2 c. strawberries
-1 C. milk - 102
I gave option of pizza. He wouldn’t eat it because I would require 2 pieces. I finally made the chicken because he wouldn’t agree to the pizza.


Saturday, October 6, 2007
Breakfast
-1/2 banana
-1 c. cheerios
-1 c. milk - 102
Cheerios weren’t measured. N threw a fit – T measured, it was short so he added more.

N is unwilling to play conference bingo- even with peanuts. Is asking for lunch at 10:45 – but won’t eat something.

[End of log]

Low Weight

During October, N hit his new low weight - 82. He has lost 22 pounds (20 of it in two months). I figured he had been losing one pound every three days. He looks very angular -- though not skeletal like pictures I've seen. At this point, I started to be concerned for his life.

Finding A Doctor

Thus began the search for a doctor. We were not able to find anyone who primarily dealt with boys and eating disorders. In the end, our neighbor recommended a doctor that worked mostly with young women but was currently working with another 12-year old boy. This doctor was out of our insurance network -- but came with such a strong recommendation (honest and a good man) that we finally scheduled to see him.

September

By this point, N had lost 20 pounds. The obsession and daily emotional battle wagged on. We knew at this point that it was probably time for some help. N weighed 84 pounds.

Here is the correspondence with my neighbor-doctor from September 18:

At what point, in your opinion, should we seek professional help with N? He has continued to lose weight. His idea of what is "healthy" just seem to get stranger and stranger. He is seems to be thinking/talking about food 24/7. He'll offer to cook, but won't be willing to eat it. He scrutinizes every single calorie and gram of fat. By the end of the day, he is so hungry, emotional and frustrated that he usually winds up in tears. We've set up "conditions" for playing football. Those conditions seem to be day-long battles. He asks over and over and over if "this is healthy." At some level he can't even choose what to eat for himself anymore.

We've tried to de-emphasize calories/fat and tried to emphasize food as good fuel. Still, he over scrutinizes every choice and tries to find the "better" foods. He is so concerned that every food that he eats will make him fat. But at this point, he is barely eating enough to stay alive.

It sounds like Dr. H may not be the best choice for N situation. Is there someone in the area that works with children and eating disorders? We'd trust any recommendation that you make.

*************
Doctor's response:
*it's time to get help.

Continued Correspondence - August 21

Thanks so much for all of this information. We've been listening carefully to N the past few days. He continues to loose weight, though. I hid our bathroom scale, but he searched for and found it -- and has lost another pound (he has lost 13 pounds in one month). The scale is now "unfindable."

I told him yesterday that he could only go to football if he promised to drink 1/2 of a 12 oz gatorade during his two-hour practice. He refused and cried and refused and cried. Finally he said that he would not go to football (I think trying to call my bluff). I said, "fine." After much anguish, he went to football and said that he did drink 1/2 of the gatorade (could be lying but he is usually honest about things). It was probably the wrong thing to do -- but I have become much more concerned about his health because of it. Last night he talked at length about everyone in his class remembering the heavy N -- and getting to see him a lot thinner. I'm wondering if this is part of the payoff he is seeking (admiration of his classmates). Might the obsession settle down after school starts and the payoff ends (or doesn't materialize)?

Anyway, the short part is that I called his pediatrician to see what he recommended. He referred us to Dr. H, a psychologist that specializes in children. It doesn't state that Dr. H deals with eating disorders. Is that a concern? Do you know Dr. H -- and would he be good to work with in this situation? Am I jumping the gun? Or should I give N some time and see if things work on their own?

Thanks so much for guiding us. We're pretty clueless and it feels overwhelming that we might need to take N to a Psychologist.

*********************
Doctor's response:
*explained there is a reinforcement.
*Dr. that was recommended deals primarily with delinquent children.
*okay to make football dependent upon eating.
*try reinforcements/set limits and wait to see if it works.

Looking For Help

We are very religious people. Early on I saw Heavenly Father's hand guiding and helping us.

We live four houses away from a Psychologist (Ph.D) that specializes in eating disorders. They are friends and also attend church with us. We are also very private people. But after lengthy discussions and concerns, we decided it was time to find some help. So I contacted our friend.

This is my email from August 17 (modified to removed names):

I have a concern about N -- and because of your professional training, I'm hoping you might have some recommendations.

N has lost 12 pounds in the last month:

He had a friend tell him that he was fat. I showed him on a chart that he was a perfect weight for his height. He had a pediatrician visit and the doctor also confirmed that N was right where he should be. But N was so concerned about it that he started obsessing about everything he ate. Right now, he won't eat anything with artifical sugar. Which is fine, but his overall caloric intake is so low (especially with him practicing football for two hours every day). I have been able to get him to drink 4 or 6 oz. of gatorade at his football practices -- and I feel like I'm almost forcing him. But I've been so concerned -- especially when he developed a metallic smell to his breath.

Anyway, something about it is self-reinforcing. He has commented that he feels better about himself when he doesn't eat. He also is ALWAYS talking about it -- calories or fat or snack vs. treat. I finally got online and made him a personal "nutrition" chart based on the current recommendations. Again, the obsession with the chart -- and he made comments like, I don't feel good if I eat that much (speaking of the recommended amounts).

Both T and I have been very concerned (enough that I'm contacting you). N knows that I talked to your wife about it. I actually think N realized how seriously we were concerned once he knew that I was asking for help (and I've seen some improvement over the past 24 hours). But he weighed himself this morning and had lost another pound.

Obviously T and I both struggle with weight. I have to watch my sugar because of insulin problems. But we have tried to not dwell on these issues. Since the boys were little, we've always talked about making healthy eating choices and not worrying about weight. We've tried to teach them to be moderate and wise.

So my questions:

Is this just a phase?

How should we respond to N when he obsesses about food?

How should we deal with the issue generally?

*************************

The doctor's response was:
*he didn't deal with children.
*to get rid of the scale.
*to deemphasize calories/fat.
*to help him talk/journal about his feelings.
*talk about food as energy.
*look into intuitive eating.
*could be a phase.

Football

Football practice started the last week of July or the first week of August. He had always wanted to play tackle football -- especially since two of his friends had been so involved with football the year before. I'm not sure he really loved the idea of playing football as much as he loved the allure of football.

Practices were two hours every day. They were conditioning and working hard in the hottest part of the summer. At this point, I really saw his weight coming off. He informed me when he hit 92 lbs. That was when I really started watching and worrying.

The Beginning

I suppose there was no definite beginning to his disease. There were only small clues (and if I had only known -- I would have done a million things differently).

I remember the first clues from this past July. I don't remember what order they came in. One clue was that he stopped having treats. That was okay. We could all probably be fine with fewer treats. Another clue was his confession that his best friend had told him he was fat. I also remember him standing in front of a mirror and looking at his love-handles. At some point during the month, he found our scale and started weighing himself. And little by little, he started talking more and more about food. He started scrutinizing every food and every menu. I didn't know this at the time, but he had also heard Grandma talking at length about her new diet. I was so surprised to hear him suggest while at his lowest weight that he should go on Weight-Watchers with Grandma.

He had a pediatrician appointment mid July. I had his doctor emphasize to him that he was the appropriate weight for his height. At this point he was about 98 lbs (4'10 1/2"). He had already lost 6 pounds from his high weight of 104 lbs. At this point I even showed him his BMI -- and that he was completely normal.

Leading Up

He was never fat. I did have to buy him some "husky" sized church pants once. At that point, I was more concerned about his eating habits than I was about his size.

We've never emphasized weight in our family. In fact, because of observing others who talked about weight at every turn, we really didn't discuss weight at all. There were some exceptions. First, I'm prediabetic. I have to be so careful about the things I eat and my exercise habits. He has observed this about me since he was four years old. Right now his dad is heavy. He has struggled with his weight and yo-yoed in and out of the Atkin's diet three or four years ago. I did the Atkin's diet with his dad -- since so many of the principles were consistent with diabetic eating.

Instead of talking about weight, I would talk about being "healthy." We all talked about healthy choices, healthy habits and healthy foods. Unfortunately, I also labeled foods as good and bad. He seemed to hear these discussions and partially apply them to his eating and habits, but it was never an obsession.

He is such an intelligent boy. He was academically gifted from the beginning. He had passed by the other kids his age years ago. His teachers varied, though, on whether they would make accomodations for him. Two were fantastic and kept him busy. Three teachers, however, insisted that he stay with the class. He became bored and developed bad work habits. So, in fifth grade we had him tested for an accelerated classroom. Of course he qualified. We were very prayerful about having him attend -- and in the end we left it up to him. The program has been both good and bad. Good because he is finally challenged. Bad because he no longer stands out among peers. Bad because it was a very rough year helping him to change his bad work habits.

N has always been obedient -- a good kid that wants to please us and do what is right. I realize now that I have always put a lot of pressure on him. I have very high expectations. I always have my fingers in a million things. We spend regular family time together -- but I also volunteer at the school and spend significant amounts of time in church service. I play in a local orchestra and am involved in local politics. Family is my priority -- but not always my immediate focus.

I have good kids. They are all good, obedient and kind. We praise and support them anyway that we can. He hasn't been involved in too many things. He plays the guitar, attends scouts, and plays occassional sports. He loves video games and reading. He is like any other kid and can take a whole Saturday to finish 15 minutes of chores. I really thought he had a good sense of self-worth.

I could never have imagined that anorexia could affect any of my boys -- it's a girl's disease. It's been a surprising and overwhelming at times because of this misperception.