How far would you go.......

[Dedee]

My oldest son is 17 and has had PANDAS since he was 7. He has been relatively stable since he was 11, which was when we finally found a specialist, had his tonsils removed, and put him on continual antibiotics. Since then he has been an A-B student, not given us any real trouble and hasn't had any real PANDAS issues to speak of. His only issue has been some residual eating problems from as far back as I can remember. He only eats certain things. Has a very limited menu (it's mostly a texture thing). We have tried counseling many times in the past and with no real gains. The summer of 2011 we tried the USF CBT intensive program, but he went for two sessions and then he refused to go back. He is 6' 180lbs so obviously I couldn't force him into the car. He absolutely denies that this is an issue and says that I am the one with the problem. So now here we are at age 17 and things seem to have gradually gotten worse. He doesn't even eat in front of others now and only eats in private. Obviously a social issue. When I talk to him about it he refuses to admit it is a problem. Honestly, it's like talking to an addict or something. He says there is nothing wrong with wanting to eat alone and no matter what I say he denies there is a problem. I can just see him sinking lower and lower with this issue.

 

My problem is that he is 17 and I have less than one year if I am going to help him. I don't think this is an infectious issue, his strep titers have been stable. I can't stand that he doesn't do anything with his friends or have a girl friend or anything because it would involve eating out. I feel like I should do something. So yesterday I called Dr. Storch at USF (the nicest man ever). He knows my son because he interviewed him for the program and then we spoke after my son refused to return to the sessions. He said if I really felt I should do something that I could give my son an ultimatum....he could either go to the USF program and participate or I would place him in an inpatient residential program (he suggested Rogers in Wisconsin for eating disorders). Of course I would have to be ready to back up that threat and have things set up and ready to go with the residential program. This is really hard.....I want to help my son. I know this is very dysfunctional and he is not going to develop normal relationships without working through this. On the other hand, I have seen how huge his fear is and I'm not sure of what his response would be if I backed him in a corner that way. He is such a good kid but I feel like I'm not being a good Mother if I don't do everything I can to get him through this.

 

What should I do? Do I just leave this near adult alone with his issue and his denial. I have taken him to therapy for years (literally 2 years) while he refused to do a darn thing (when he was 12-14). Then there was the disaster in Florida. Should I just throw my hands in the air and say I'm done or do I keep pushing until I possibly push him too far. Does anyone have the answer?

 

Dedee

Edited January 30, 2013 by Dedee

[LNN]

Does anyone have the answer?

 

Dedee

 

Ha! If any of us did, we would be here?!

I think your fears are valid. I think I agree with Storch that if you're going to issue an ultimatum, you'd better be ready to back it up immediately - like an intervention, where the bags are packed, the car is warmed up, you have muscle-bound men in the room ready to force the issue and Rogers has a bed ready for you - before you have "the" conversation.

 

Would it work? Only if your son is ready for it to work. I've watched family members struggle with addiction and OCD and it's only when the internal determination is there that the person has any chance of success. (Not saying addiction is a choice, but determination certainly plays a role in breaking the addiction or compulsion).

 

Is he there yet?

 

You're beating yourself up and feeling the threat of time because you only have legal control for another year. But you don't have "mental" control. None of us can control whether our kids "want" to cooperate with treatment. Therapy isn't about medication compliance. it's abut being willing to face your fears - and that willingness/readiness has to come from within. You can watch "Hoarders" and tell who's going to succeed based on when the loneliness and pain becomes greater than the fear. So it's not about you, mom. It's already in your son's hands. Always has been. Always will be. You can be the coach, but not the quarterback.

 

Now, I don't mean that there's no hope. You talk about sensory issues and social phobias as opposed to an OCD driven behavior. I tink you've seen some benefits for treating DDs methylation? Have you done any testing for your son? One book I highly recommend is James Greenblatt's Answers to Anorexia http://www.jamesgreenblattmd.com/ It talks about the impact of nutritional deficiencies in eating disorders, especially zinc. Depending on the cost of Rogers and whether it would be covered by insurance, maybe a Yasko or 23andMe test would give you options that your DS found less objectionable? Just branstorming. I'm not saying methylation is the answer to world peace. Just trying to think of other things to consider if you don't think he's ready for an intervention...

 

Where will he be living in a year? At home or away? That could play a part in how you proceed. If he'll be at home, you have more time, even if you won't have the same legal options. If he's away, the chances for relapse might be high unless he's on board before forcing a treatment.

[airial95]

I do have the answers - all you need to do is send me 3 easy paments of $49.95 to my private island in the Bahamas and I'll give them to you!

 

Sorry - I was dreaming there for a minute!!!

 

LLM has some good points, and of course, Dr. Storch is awesome. (And I don't say that simply as a proud USF alum )

 

If you are going to do the ultimatum thing - it's just like Intervention (since we're talking A&E programming!) - you HAVE To be able to follow through, which is a tough choice to make.

 

Might I offer an alternative suggestion? At 17 - is there something else that he's striving for? A car - maybe?? I'm not too proud to say that I've used bribery on my kids. Possibly write up a contract that says that if he commits to therapy - or the USF program, or whatever, and give it his best efforts, you'll get him a car at the end of a certain period. Make it specific, outline the goals and what is necessary in order to reach them.

 

For example - he must attend the USF program and complete it, and follow up therapy for 12 weeks post USF, which certain milestones to be reached at the end of a certain time period (like eating dinner with the family, eating in public, at a restaurant, etc...)

 

Maybe put incentives in there for him - if he reaches any particular goal early - he gets another $xxx added to the budget for the car, or a gas card, or something.

 

 

Just like Dr. Storch's suggestion - you have to be ready to follow through on your half of the contract in order for it to work - and there should be some built in terms for setbacks - because there will be some. But by creating the contract together, he might take some ownership in the process.

 

And if he still won't admit that it's a problem - frame it this way - then what do you have to lose?? Humor me with this little arrangement for 6 months and you get a free car out of the deal??

[Dedee]

Thanks to all of you who have replied and pm'd. LLM, I have actually checked my son for the KPU and he was boarderline positive. So I have been treating him with zinc and P5P. He is also compound heterozygous C677t/A1298c. As you well know, there is little known on how to treat the A1298c mutation, but we are treating him along with the others for the C677t. I have considered that he may have some depression issues related to the A1298c mutation. He is on 5HTP for several years. I am considering an SSRI to see if that may help some of the social anxiety that seems to be related to his eating. Dr. Storch thought that should be considered.

 

Arial95-The whole bribery thing is brillant actually. Of course he would love a new (used) truck or a little fishing boat. He wants so badly to be on a college fishing team some day. I think you may be on to something here. Of course, as I mentioned, his fear is huge so he may rather continue to drive around the old 1995 S10 that is literally about to fall apart. But hey, it's worth a try. I've never been above bribery. Where should I send those 3 easy payments anyway?

 

Thanks so much everyone for your input!

 

Dedee

[Kathy4Him]

Found this on the ocd foundation site:

By Melissa Binstock

 

Books, pencils, pens; books, pencils, pens: This is the mantra I began repeating to myself when I was just eight years old; this is the mantra that represents the start of my battle with obsessive compulsive disorder.

 

My OCD began as an innocent attempt to organize my life after I began experiencing symptoms of Tourette’s syndrome and dyslexia. The uncontrollable movements my body made and my inability to read left me feeling as though my world had been tossed upside down—I felt as though nothing was in my control. As a result, control became my new obsession. At first, I endeavored to gain control of my environment by controlling my belongings. At school, that began with organizing the books and pencils I kept in my desk. Books had to be arranged in a specific order with the largest on the bottom and smallest on top. Each pencil needed to be perfectly sharpened, aligned, and ordered by length in the plastic pencil holder. After making sure everything was perfectly ordered, I had to perform the ritual of closing my eyes and touching the lead tip of each pencil five times before being able to start on my assignments.

 

If my ritual was interrupted or didn’t feel quite right, I would have to start again. My teacher demanded that I “Stop it!” and “Pay attention!” which caused such feelings of complete frustration that those feelings began to overflow like water rushing out of a burst levy. I wanted to cry, stomp my feet, and yell at the top of my lungs, “Just let me be! Just leave me alone!” Couldn’t she see I had to perform this ritual? Didn’t she understand I didn’t have a choice?

 

I yearned for a safe world, a predictable world. The rituals, I believed, gave me that world. They gave me some sense of stability and coherence. If I couldn’t complete the ritual or get it just right, the tension and anxiety over the possibility of losing control would become too overwhelming—my stable world would turn to chaos once more. As time went on, though, controlling my external world was not enough to keep the anxiety at bay.

 

What I really wanted was control of myself. I believed the most obvious way to do this was first by controlling what I wore and later, what I ate. Each day I had to wear the same faded green and brown-striped T-shirt. Although other kids teased and taunted me for always wearing the same thing, wearing that T-shirt gave me a sense of power and stability. I would be okay as long as I had that T-shirt on. As I grew older, just wearing the same shirt wasn’t enough--my desire for control and safety led me to begin to control the foods I ate. I devised a list of rules that had to be followed to the letter; for example, without knowing anything about nutrition, I arbitrarily decided that I could only eat twelve grams of fat per day and twelve grams of sugar per item. For some reason, twelve was a magic number in my compulsive world.

 

Controlling my clothing and food was tiresome, yet it kept the anxiety at bay. Eventually, my rituals became more elaborate and all-consuming: I could only eat at one restaurant, I could only consume white foods, I could only eat when no one was looking. By the time I got to high school, my OCD had all but taken over my life. I had to follow a strict routine marked by obsessions and compulsions from the moment I woke up to the moment I went to sleep. Just getting dressed for school became a tedious task of dressing, undressing, and dressing again until I felt like my clothing fit just right. As college approached, I feared what my roommate would think of my idiosyncratic behaviors—my inability to eat in front of people, my strange dressing habits, my odd predilection for white foods. Yet, I also feared the inevitable surge of anxiety I would experience if I relinquished even an ounce of control.

 

As my freshman year in college began, my simultaneous fears waged a battle against one another, making me feel as though I was at the center of an interminable game of tug-of-war. The safety and solace of my OCD with its meticulous obsessions and carefully crafted rituals was pulling me in one direction, while my desire for normalcy was pulling me in the other. I probably would have sided with my OCD had it not dawned on me that my desire to regain control of my mind and body had actually caused me to lose complete control of absolutely everything.

 

I began to come to this realization when my restrictive eating habits caused me to pass out one night in my dorm room. I hadn’t eaten much of anything during the day, partly because I had been surrounded by people for the majority of the day and couldn’t break away to perform my careful and precise eating rituals, which involved eating by myself. The experience left me terrified and helped me realize that my OCD was out of control, and I needed help. And help did come—in the form of a lecture in my psychology class. Although my professor wasn’t aware of it, she was simultaneously serving as a professor and a therapist for me during this lecture. This professor taught me about a system of therapy known as cognitive behavior therapy, or CBT.

 

Learning about CBT was like one of those great ah-ha moments where everything suddenly makes sense. Understanding that my thoughts had a heavy influence on my feelings, and learning that if I could change my thoughts I could also begin to change my feelings, were life-altering concepts. I began to focus on the thoughts that my obsessions and compulsions were based on. One of those thoughts was that the rituals I preformed would help me gain control of my life. Yet, as that night in the dorm room demonstrated, I had entirely and utterly lost control. The reality of the situation made me realize that my obsessions and compulsions were not only illogical, but that they were potentially deadly. And so, I began the difficult challenge of using the tools I acquired from CBT to help me overcome my obsessions and subdue my compulsions. However, I wasn’t alone in this process. The professor who first taught me about CBT and who was also a licensed therapist provided me with support, guidance, and resources along the way.

 

One of the tools of CBT that was particularly helpful was exposure and response prevention (ERP) in which I forced myself to do an anxiety-provoking activity again and again until it no longer triggered the surge of anxiety I so greatly feared. During these activities, I would use the CBT tool of catching, challenging, and changing my destructive thought-processes that fed my anxiety. A particular task I worked on was eating in front of people. Although the anxiety I experienced during this task was painful, I found that the more I engaged in this task and the more I focused on catching, challenging, and changing the harmful thoughts about losing control, the lower my anxiety level became. The process took time, and I cannot sit here and tell you that I am 100 percent anxiety-free today. However, what I can say is that CBT helped me gain control over the obsessions and compulsions that once ruled my life.

[MomWithOCDSon]

DeeDee --

 

I have very little to add to the excellent ideas and advice suggested by LLM and Arial . . . in your shoes, I'd be ready to try either idea or both!

 

I will say, with OCD-oriented issues and our strong-willed, intelligent, teenaged DS, unfortunately, "consequences" seem to make more impact than "incentives." Bums me out a little, actually, because I'd really prefer to reward his good efforts over having him face consequences for his lackluster ones or complete lack of compliance (rarely, but it happens).

 

So, the only sort of "amended idea" I might add would be, if he turns you down on the new car or boat, you might be in the position of having to consider what privileges he currently enjoys that you might consider curtailing in order to encourage his participation in therapy. If he has to face the "shrinking" of things he already enjoys and inherently values, that might speak louder than some sort of "far-off" goal, getting the prize only after he's mastered the obstacle course, which can seem abstract and like a huge drag! Our DS remains a Man of Immediacey, so anything too far down the road, he generally lacks the ability to view it as a tangible, obtainable benefit. But hit him with the loss of 30 extra minutes of play time on a Friday night, and that's a wake-up call!

 

I'm also thinking there might be some "exposures" you could implement at home. You say he eats alone . . . even at home? Or is this just with respect to peers? If it includes family, maybe you can "expose" him to sharing his eating space at home (wherever that is) with another member of the family; so, for instance, I'm thinking if he eats in his room, you quietly come in with your dinner plate, too, and take a chair or a corner of his bed and eat with him. He doesn't have to engage in conversation or even acknowledge your presence, but he doesn't get to be entirely alone. Then you could expand upon that, bringing in Dad, a sibling, etc. until he's willing to actually share family meals with his family.

 

If it only involves his peers, however, is there maybe one or two good friends he has who are on the mature side, solid and accepting of eccentricities or quirks? My DS has a couple of good friends like that who are really good at "rolling with the punches," and they've helped us with exposures a time or two. Maybe you throw a pint-sized pizza party in a "safe space" for your DS and just one friend, initially, with no video games or movies or anything else available until everyone's consumed at least one piece of pizza? His friend cracks a joke or two, or maybe just eats quietly while your DS pushes through whatever fear is at the root of this behavior? But with the terms and conditions laid out for everyone in advance, there are no surprises or "embarrassments" because everyone's on the same page going in.

 

I know you'll get through this . . . you're a great mom, and you've done such wonderful things with your DD! Hang in there!

 

Nancy

[airial95]

Nancy - good suggestions on easing into the eating with others thing... I like it.

 

My son is only 5 now - but last year he developed a HUGE anxiety about taking his meds every day. A task that previously was such a non-issue we would just lay them out with his breakfast/snack and he would just take them of his on volition. Suddenly - one day it was all angst to the point where he started vomitting up all the meds - and it progressed to the point where the mere mention of "medicine time" set him to throwing up. It was a nightmare for everyone.

 

We tried various things, "tricking" his OCD, creating all sorts of games, etc...everything worked for a while, but just like OCD - unless you address it, it just keeps getting bigger. At only 4 - we were able to add "taking medicine" to his "Chore chart" (which had such difficult tasks as "putting clothes in your hamper"). He had asked for a chart when his sister started using one, so we figured why not. He asked if he could get stars for taking his meds - we said why not. His sister used accumulated stars on her chart to eventually earn her DS - but there were smaller rewards for milestones along the way. My 4 year old has his heart set on a PS Vita - a $300 personal gaming system that I would normally NEVER buy for a 4 year old, but having that goal helped him many times take his meds with less (albeit sill some) fighting. I was amazed that such an abstract concept worked for a 4 year old. But he earned his Vita (and just as quickly as the medicine anxiety started - it completely dissipated over the holidays - with him now able to swallow multiple pills in one swallow like it's nothing!)

 

Dedee - if you need some motivations along the way to keep him focused - maybe at certain smaller milestones he would get to do things like working togehter online to see what type of car he wants, go to the car dealership and look at what's available, then maybe take a test drive, etc...might help keep things in focus.