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.