Parent as trigger OCD

[norcalmom]

Things have been going pretty well. We have switched to high does Doxy and A-myco after confirming chronic mycoplasma. He's also rotated in some cst-busting Lyme meds No exacerbations - almost all symptoms gone. (One "minor" OCD thing and I'd say some mental inflexibility too).

 

BUT..He still has one persistent OCD thing - he can't stand to hear me swallow or eat. I have a couple questions for you OCD experts out there. One is the nature of his OCD - he has no rituals - he just gets VERY angry at me. I feel like a battered wife on some days. I try to be as quiet as I can, and have set up an environment where he eats in another room, he wears headphones on his computer, I only stay close to him for short periods of time (because then I will have to swallow saliva in my mouth and thats just as bad as food to him - it doesn't matter what it is). I know we probably should not have done this - but we had to just to get through the pandas tough times. So now we have enabled him to avoid this trigger for years (Or I have tried to). What is the most effective therapy for this (I'm thinking exposure therapy - ERP?)

 

Up until he started the Doxy he couldn't 't eat with my husband either, but now he can eat in restaurants with him. So they've been eating out a lot. (without me). He did't do any therapy to acheive this - it just just got better when he swithed to Doxycycline. And I've been waiting for it to happen with me. Its not happening - his issue with me swallowing was one of first symptoms and most consistent through past 3 years of pandas.

 

I think he's going to need some kind of psych-meds as well as therapy to get him through it (oh, and me - I'm going to need something to get ME through it!!)) Any recommendations? I've tried NAC, and I think it helps a little, but not nearly enough to get him through therapy, which I've started to look into. So I'm also looking for advice on combining a sort-of Lyme protocol with SSRIs.

 

If anyone else out there has some stories on what to do this stage in the game I'd love to hear about it. Especially if you were your child's trigger. Does meeting with therapist once per week really help? I would imagine that he will slip back wihtin a day or two unless has "homework" with the exposure (which is ME) and I don't know if I can handle it. Should I look for a more in-depth type of program or more frequent meetings?

 

Thank you!! Any input appreciated.

[dcmom]

Hey norcal-

 

I have some thoughts

 

First glad things are going fairly well.

 

We were in your shoes (I think) last spring. DD had a fairly severe episode in January. Overnight onset of panic/ ocd. We treated her, which really calmed things down. You could see it in her- personality back, physically looked better, could see it all in her face/ eyes. YET, she was stuck with one MAJOR ocd. Fear of vomiting at school. We tried and tried. She went on homebound and we did what we thought was best, trying to get her back little by little.

 

So- in this situation- she was healthy, pandas was gone, but ocd was really entrenched.

 

We were sending her to ever so painfully slow increasing amounts of time in school (this was the response prevention part of erp I guess). BUT- she was miserable. She was worried the entire time at school, couldn't focus, counted the minutes to get home, and cried every morning. It was miserably horrible for her, and to see her like this. BUT outside of this- SHE WAS COMPLETELY HERSELF, COMPLETELY NORMAL.

 

This summer we went to an amazing outpatient intense pediatric ocd program. There she worked on EXPOSURES to her ocd, and COMPLETELY recovered. She no longer has this ocd at all.

 

How long has this been going on? While I totally understand you needing to keep the peace, and have him eat- I know you know this is accomodation. This has to stop, and he has to start doing the hard work of ERP. I cannot stress enough that you need to find an unbelievable psych who totally "gets" ocd, will do exposures in his/her office, and is willing to be tough. This is not easy to find. You may consider contacting IOCDF or Dr Jenike for some suggestions in your area. We flew from NJ to FL for the program we went to, and it was SO worth it.

 

After having two pandas kids suffer multiple episodes- yet fully recover quickly- over the last few years, I am a big believer that some ocd can become learned, and may need serious therapy to completely get rid of.

 

This must be SO horrible for you- and yet, since it seems he is "healthy" he should be able to be pretty successful with therapy.

 

Good luck!

[PowPow]

I am (and my husband, also) the trigger for a great amount of the OCD around here! It is a nightmare. I am so, so tired of it.

I cannot say how to conquer it, but honestly, once a week therapy seems more like maintenance to me and not treatment-level. This is from experience. Once a week is not cutting it here.

Contact the IOCDF and see if you can find an intensive outpatient program. we are heading that way very soon with one of our daughters.

If your child is willing, jump on it.

I think therapy is very necessary to treatment- whether it is "learned behavior", habit or caused by brain changes from the PANDAS-- it does not matter, the OCD is there and it needs to GO!

best wishes and contact the IOCDF- maybe there is something remotely close to your home.

[MomWithOCDSon]

Hi Norcalmom --

 

Glad to hear that things are going relatively well, but sorry this one behavior, especially, seems to be very entrenched. And to have you be the "trigger"! Been there, done that, and I know it's no fun. I'm sure it doesn't provide a whole lot of solace, either, to hear that if it weren't you, it'd be someone or something else, 'cause it would.

 

I went through something similar with my DS. It wasn't chewing or anything related to structured times of the day (like mealtime), but it was equally ridiculous/irrational/persistent. First I tried reasoning with him, then I expressed my hurt, anger and frustration and, sort of like you're doing by having him dine out with his dad, I both retreated and accommodated at the same time. I, too, knew it wasn't a solution, but I just needed a break from being his pinata for a bit. Sound familiar?

 

Answers to your questions from my perspective and experience: Yes, therapy WILL help. And it will help not only him, but also YOU. During the roughest point, I actually spent a half-hour solo with the therapist, talking through how I was reacting to DS, seeking support and some guidance for dealing with the situation better. It was very helpful all the way around.

 

I know the intensive programs can be great; for us, we didn't feel the need or ability to uproot and put ourselves in that position for 2 or 3 weeks. When DS was at his worst, rather, we would go to 2 or 3 therapy sessions per week locally, and that kept the continuity. We did (and still do) homework, though. But with the support of a good therapist, you may feel less "beaten up" and better enabled to take what your DS can dish out, at least in the short term while you're working toward those specific therapeutic gains.

 

And 2, yes, we use a low-dose SSRI. But we don't have any lyme to contend with, though I'm not sure there would necessarily be any conflicts with lyme treatment protocols anyway. We use Zoloft, 75 mg., and it does seem to help. It "takes the edge off" some of the anxiety and OCD so that he can handle some of the OCD thoughts and behaviors better. Full disclosure, though; we also added lamictal a little over a year ago, and that was our second turning point (the first being upon finding PANDAS and implementing antibiotics) in DS's recovery. As a mood stabilizer and glutamate modulator, the lamictal is less about the OCD than it is the hyper-emotionality that the OCD thoughts can induce, like your son getting really angry at you for chewing in his presence. With the lamictal, my DS is more capable of "letting go" of his emotional attachment and/or reaction to OCD thoughts and behaviors, look at them more objectively, and do his "homework" for moving past and eliminating the OCD issues altogether. He's still a work in progress, but it gets a little better every day.

 

Hope some of that helps! Good luck to you!

[norcalmom]

Thank you all for all the good advice and support. We had another blow-out this morning over me drinking coffee (he was on the other side of the house, with two sets of doors closed between us and the TV going in the room where he was eating breakfast - stormed into the kitchen, took my coffee and held it up and told me I couldn't drink it..yelled a couple other things too). I called the psychiatrist that gave us diagnosis years ago and asked for some advice, and I am in process of setting up appointment with her (and just me, where I will probably break down and cry because I can't talk about this with anyone - 'cept you guys of course).

 

She is very pandas aware and has treated or diagnosed 30+ pandas kids, but she is too far for us to go on regular basis. I'm debating the intense program in FL (from Northern California). Is that really the only one?

 

Thanks for letting me know the dose on the SSRIs and the lamicil - I will be researching that!

[MomWithOCDSon]

I'm debating the intense program in FL (from Northern California). Is that really the only one?

 

Thanks for letting me know the dose on the SSRIs and the lamicil - I will be researching that!

 

The Murphy/Storch program in FL gets rave reviews from everyone who goes. There's also a well-respected program in Oconomowoc Wisconsin at Rogers Memorial; you might want to check that out, as well, since it would be about 1,500 miles closer!

 

The only program I know specifically of on the west coast is a summer program held in, I think, Seattle? It's for teenagers, though, and I'm sorry I can't recall your DS's age. I've spoken with folks at the IOCDF about the summer program, and they said they've heard good things about it. Here's a link, in the event summer feels like the right time for you.

 

Seattle OCD Program for Teens

[LNN]

Here's a posting on IOCDF about a Storch Skype study....not sure if it's still active but might be worth a phone call...

http://www.ocfoundation.org/Participants.aspx#videophone

 

Videophone CBT for Children & Adolescents with OCD

Based on our promising findings, the University of South Florida OCD program is conducting a research study to examine what factors predict treatment outcome to cognitive-behavioral therapy that is delivered via videophone. We are recruiting a group of children and adolescents with Obsessive-Compulsive Disorder (OCD). Our past research has found that as many as 80% of kids who received this type of CBT received some benefit. However, we want to know for whom this treatment is most appropriate because videophone-administered CBT may be a way to make treatment more convenient and affordable (less travel costs) and less time-consuming.

 

Your child must be between the ages of 7-17 and have problematic OCD symptoms to be able to participate in this study. You will have to travel to our facility for the initial evaluation (we cannot cover these costs); however, study treatment and evaluations will be provided at no charge. If he/she is eligible to participate in this study, he/she will either receive 14 90-minute sessions of videophone-CBT (twice a week for the first 4 sessions) and 3 psychiatric evaluations of varying lengths.

 

If you are interested or have questions, please call Dr. Eric Storch at (727) 767-8230 or email him at estorch@health.usf.edu.

[norcalmom]

Thanks LLM - sending Dr Storch and email right now!