Reaching Out

As N continues to heal, I continue to look for meaning in our journey with anorexia. One thing that I'm sure of, is that I want to help other parents know that they can and should be proactive when helping their children get better from anorexia. I want to dispel the myths associated with eating disorders. I also want to help other parents find their way to current and appropriate care that is available out there, but is often hard to find.

I've had several families contact me through this blog. Some have been a constant support for me. I think these families, like Erica (see ongoing comments) have helped me more than I've ever helped them. Other families have wanted to know where to find help. I've been so happy to hopefully save them some of the time that it took me to find the resources we used. In several cases, I'm aware that these families connected with trained therapists. Their children seem to be well on their way to getting the help that they need. Somehow that adds meaning to our struggles with anorexia. I really hope that we can alleviate more suffering than the sum total of ours.

I've also made some mistakes. More than anything, I now realize that parents need support. In one case I was quick to criticize a certain therapy approach. I never heard back from that mother. I still have concerns about the chosen therapy approach - but I now understand that she needed support as much or more than knowledge from me. I should have handled that conversation much more gently.

N having anorexia has been hard - probably the hardest experience of my life. But I have also changed and grown in ways that I wouldn't want to give up. Maybe the changes in me are the meaning that I'm looking for. Maybe there is more. It might take more than a lifetime for me to find full meaning in this trial. I'm still not completely sure how to make a difference, but I want to - and I'm trying.

Seven Days

We are only seven days into the new school year and we've already had two more hurdles.

N's new P.E. teacher offered an "optional" BMI test. I don't know what N was thinking when he agreed to do it. He said that he was "curious." N guessed at his weight (because he still doesn't know what it is) and calculated a guessed fat percentage. N protested that it hadn't bothered him, but then confessed this morning that it was causing him stress. Hopefully lesson learned.

His 9th grade Biology class did a nutrition lab yesterday. They read labels, discussed fat content, and determined which cereals and candy bars were the healthiest. N worked through the cereal page and then refused to do the rest. He came home emphatic that he (or I) needed to let his teacher know how wrong he was, that there aren't "bad" foods and that people just needed to eat a variety. I'm glad that some things have sunk in for N. I couldn't even begin to explain all of the varied nuances and approaches that can be emphasized for different medical conditions. Really these nuances are irrelevant for N right now. It's better for him to have blinders on and just focus on how HE needs to deal with food.

I sent an email off to the teacher asked for a replacement assignment and explained why this one was so difficult. I encouraged N to also talk to his teacher (but knew that I needed to be the official word). The teacher was fantastic, waived the assignment, and agreed to try and be aware of future topics that could be difficult. Besides being clueless about eating disorders and problematic approaches to health, N's teachers have all been great about adapting and adjusting curriculum for him.

Back To School - 2010

The laziness of summer means I'm always a little blindsided by the return of school stresses. My kids headed back to school this past week.

N is still doing well despite having his wisdom teeth removed and getting high-sticked in a street hockey game a week later (resulted in stitches in three different places and two loose teeth). I was surprised to see the question about past history with eating disorders come up with the wisdom-teeth procedure. I hadn't even thought about it, but he had to come fasting. They asked "would that be a problem for him?" All of a sudden I could see the implications of eating difficulties that would result afterwards too. But it was fine. They scheduled him for their first extraction of the morning. And we provided him with a lot of good soft foods to keep his calories up while his mouth healed. It turned out to be very relevant preparation as he healed from his trip to the emergency room a week later - and had to continue his diet of soft foods.

The old question of participating in a sport has risen again. He feels "so out of shape" and wants to run track. My question is how do we help him balance a desire to be active without it turning into an exercise/weight obsession? We are very encouraging and supporting parents. As we had this discussion I could tell that he wanted us to encourage and support him in his desires to be fit and was baffled why we weren't. There were some tears as I explained why we were so hesitant. There are so many ways to be active without it having to be about an ED's version of self-discipline or rigor - both of which could trigger exercise-binging. I can also see him looking to the exercise to solve some of his social reluctance. We made him aware of our concerns that he was expecting track to solve the problems for him.

So, what to do? I don't know.

Spring 2010

N continues to do so well. He is growing so quickly - sometimes as much as an inch in only a month's time. He'll be 14 next month - three years since he got sick. His spirits are high and many of the issues that we've dealt with in the past are only in the background now. He has an occasional bad day, but I see him dealing with his stress and anxiety in mostly appropriate ways. Hopefully we can help him to cement good stress-dealing habits and prepare him for leaving home at some point in the future.

J (12), on the other hand, continues to struggle. It hasn't gotten worse -- and it definitely isn't anorexia, but he is acting similarly (psychologically) in a lot of ways. He has so much anxiety. When he seems to be struggling most, I make sure to feed him well. I increase the fat and protein content in his meals. I don't know if it makes a difference, but it did for his older brother. My gut tells me that it also makes a difference for J.

It's an interesting correlation that raises a lot of questions in my head.

J and OCD

Well, it's been several months since I first started noticing issues with N's younger brother, J. He is the same age that N was when he spiraled into anorexia. I was concerned that J's responses were really based on his Grandmother's diagnosis of cancer. However, since then I really feel like they are not related.

J is developing OCD behavior that resembles what we experienced with N -- however there is no indication of anorexia being an issue. I feed him carefully and watch. His sudden onset of the OCD stuff last fall, however, points me back to PANDAS. And then I feel so mad at the pediatric neurologist who so quickly blew me off -- especially in light of some of the new studies that indicate there may in fact be a link.

It leaves me wondering what will happen if my boys are never able to get treatment for PANDAS (if indeed they have PANDAS). Can their bodies recover from this without antibiotic treatment?

Supersize Me!

Just found out that N was shown "Supersize Me" in his Foods class. I'm dumbfounded. I just can't believe it. How did this get past me, his teacher and/or N? Not sure what to do with this information. N seems fine about it -- but is he really?

His Brother

The last few days have been interesting for me. My shoulders are tense all over again, but not because of N - it's his brother, J.

J is currently 11 years, 9 months. He is only 7 months older than N was at the onset of the anorexia. I can't remember if the beginning was Sunday or Monday, but it was like a light switch got flipped. J has experienced three days of intense anxiety, and paralization. He said that he only feels it here at home. But last night it was enough to keep him from heading out to scouts. I had asked him to sweep and he had played on the computer instead. I got after him about it, but then he obsessed over my being mad at him -- said he couldn't leave if I was still mad.

This is so unlike him. I've got warning flags going up all over, but know I need to wait before reacting. There is a major possible cause of his anxiety. His grandmother was just diagnosed with stage 3 - vaginal cancer. We're all out of sorts because of it. He insists that it isn't related -- but I'm not sure that any of us know how much our anxieties tie into fear and death. So, I'll give J a few weeks and see if we can work/talk through this.

Then I'll panic.

A Lonely Parent

Being the parent of a child with anorexia is terribly isolating. We continue to be quite private about our struggles. I really wish that the public perception of anorexia was more accurate and not so based on assumptions of the past. It would be good to speak publicly and help change these inaccurate perceptions. But the reality is that those old perceptions are prevalent and most of those around us really don't understand. And N is going through such a tough time in life anyway. I just feel like we can't openly discuss the anorexia and not have people prejudge him (because I continue to see evidence of that judgement). N is a great kid -- but it seems that the anorexia gets in the way of people seeing that.

In the past few weeks, I've felt this loneliness more than usual. I've had several conversations with people who are aware of N's illness. I thought that they understood the realities of the disease. But in these conversations, I became quite aware of how much they don't understand. I spent many minutes last week, for example, trying to explain to someone how exercise figures into the problems of anorexia. It was hard to help her understand the idea that not exercising (regimentally) was in N's best interest. The media's misunderstanding of weight right now just adds to the isolation as I realize just how much of a paradigm shift I've already had (and how crazy I must sound sometimes).

Thankfully, I have a few friends and family members who really listen to me and believe in me regardless of understanding. [Edited to include]: And I also have a wonderful community of parents supporting each other as we all go through the same thing!

A Trip to the Therapist

N's OCD behaviors have been increasing significantly since school started. So last night, T & N went and met with his therapist for the first time since January. We had some new concerns because the OCD patterns have changed some. Instead of touching door jambs and holding his breath when someone "fat" is on the tv, he has started being concerned about chemical contamination, becoming autistic, becoming gay, and masturbation. Some of these are pretty tough topics - which we don't avoid, but are trying to be sensitive about how to talk with him about them. He hears his friends bring up these topics (in a less sensitive manner) and it scares him. I've been concerned about whether our reassurances "that he isn't autistic" for example, were just feeding the OCD loop. I didn't know whether to reassure/discuss (and potentially enable the cycle) or to refuse and potentially make things much more difficult.

N's therapist indicated that it was okay for us to reassure him once -- to give him the information and reduce his anxiety. But after that, if he seeks reassurance on the exact topic again, we should refer to our earlier conversation. His therapist didn't seem to think that the intense topics were indicators of larger issues, but rather were just the anxieties N was encountering at this moment.

Other than some of this new information, the appointment was just a rehash of many concepts and principles that have been addressed before. In some ways, it felt like a waste of time, but I wonder if N needs to be constantly reminded of the ways he can address the OCD.

I also suspect that the stress of a new school year is aggravating the OCD behaviors. N is doing well with his grades and assignments. I'm trying to let him be responsible for when he does his homework and the potential natural consequences of waiting to the last minute. He's had some of those consequences and it seems to make a difference. N is pushing himself pretty hard to get all As. We don't really care about his grades - just that he turns his assignments in. But he often lapses back to that typical "all or nothing" approach. He would rather not turn in an assignment than turn in one that is imperfect. In fact, last night I drew attention to the fact that he had very little time left to do his homework -- but he was so wrapped up in finding the perfect "third argument" that I could envision his essay taking another two hours (and it was already late). So I reminded him that it was better to get the paper done, turned in, and get a B - than to not have it done at all. I don't know if that helped or not.

His doctor was very surprised to see how much N had grown -- and that his voice has now deepened (I knew that it was happening, but it just isn't as noticeable when you live with him everyday).

8th grade

School has started and N seems to be doing fine. We met with his counselor prior to school and she agreed to "pull" N out of his health class during the week of questionable curriculum. She also gave him a pass that he can use if he is ever in a class and can tell that he needs to leave (because of how he is feeling or what they are talking about -- whatever).

N is taking a Foods class that we discovered may also cause some problems. I thought it was just a cooking class, but it turns out they do much more with calories and food analysis, etc. It looks like they will have one day on the problems of obesity and another which is just about fats/oils. I'm a little nervous about the class on fats/oils because the teacher was coming from the camp that these are "bad" foods only to be eaten occasionally. So that's two more classes that he will be missing.

I think P.E. will be fine. He has the same teacher that he had last year and there weren't any problems at all. I did opt him out of a scoliosis check (they have to remove their shirts to get checked). I knew that would be an issue for N. And on top of all of this, we had to give approvals for sex-education. But that's an entirely different issue.

Health Class

I met with N's health teacher last Wednesday. She provided worksheets for a 5-day portion of the curriculum, which included:

1) Fitness - flexibility, strength, endurance, BMI, pulse, workout principles.
2) Food Pyramid - a discussion of the nutrients and important aspects of all portions of all food groups.
3) Calories - how many do you need, burning calories, creating a menu within a calorie range, ideal percent of fat in a diet.
4) Nutrition - create menu using pyramid, self assessment profile that uses emoticon to asses amounts in each area including fat, oils, cholesterol, sodium; determining exercise needed; caloric intake and expenditure summary;
5) Eating Disorders - anorexia, bulimia, obesity, movie (Little Miss Perfect).

She was willing to excuse N from the entire unit.

I'm so glad that I met with her. I (and N) could see potential triggers on most of the days. I suspect that he would be fine on day 2 -- but that's borderline. And would we want him to be there for just one day of the unit anyway? N really wanted to be there for the discussion on day 5, but I can see huge issues with that! On day 5, not only do they discuss "potential problems" from being overweight, but the bulimia discussion includes "other" methods of losing weight like laxatives, etc. I've never seen the movie, but suspect that it wouldn't be healthy for N to indulge in seeing someone else's methods of losing weight.

N was concerned about his "smart" friends figuring out that he was missing for this whole unit (yet he was unconcerned about making comments during the anorexia discussion - go figure). We'll be meeting with his new school counselor this week to determine if she can pull him out (thus N can state that the counselor "made" him leave). I think she'll be willing.

I've known this class was coming and would be an issue. Hopefully we can handle this in the best way possible.

A Question

Would you, experienced parents, answer a question?

We seem to have reached a stalemate of sorts with the anorexia. For the most part, N is eating normally. He is currently weight-restored. With growth spurts, he'll sometimes drop his weight in proportion to his height which results in a resurgence of anorexic behaviors, but usually we're on top of those drops and help him to bring his weight up as quickly as possible. He has several OCD behaviors that he just can't seem to shake. He is still quite self-conscious and is always fixating on his clothes as well as his relationships with friends. He is struggling a bit to find his identity (but I really attribute that more to his age).

Will we just be maintaining this stalemate indefinitely? Is that what recovery from anorexia looks like? Or will there be a cessation of these low level issues as he matures and stops growing? Is there more we can do to eliminate the current stalemate?