parent - triggered 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.

[LNN]

I'm not sure that this is OCD. As I understand OCD, there is an anxiety/fear that something overwhelmingly bad may happen (obsessive anxiety) and a superstitious-like ritual (compulsion) that, if completed successfully, will prevent the bad thing from happening.

A slight exception is "just right" OCD where there's an overwhelming discomfort (say, with unevenness) and the only way to relieve the anxiety/stress caused by the obsession (evenness) is to touch or do something to make the thing even.

 

What you describe doesn't seem to have the preceding/motivating fear. It seems to be driven more by either an extreme sound sensitivity or an intense need to control. I'm no expert. Could be OCD. But it doesn't strike me that way. The thing it most reminds me of is a friend's husband who was diagnosed with babesia. Prior to treatment, he could not be in a room with lights on, could not drive in a car with other people because the sound of someone else breathing in a confined space of a car drove him nuts.

 

Can your son articulate what it is about your eating that bugs him? Is it a fear or an aversion?

 

If you do decide it's a fear/OCD...one approach would be to do baby step exposures. You can have him watch you sip a few sips of a drink through a straw. Or take one bite of something (that didn't require a lot of chewing). Then build up from there. At each step, reward/celebrate. But it's more than just building up. You'd also need to identify and confront the fear that drives the compulsion. If he's afraid you'll choke, you need to create a plan to confront that fear, not simply watch you chew one bite and then two. DCMom may have some good ideas on this if it is indeed a fear-driven OCD behavior. My personal experiences have more to do with CBT for anxiety. OCD has thankfully not been a steady squatter in my house.

[norcalmom]

I don't think is the sensitivity thing because its only me -no other noises/ or people swallowing bother him (you should see his buddies scarf down pizza -- that deon's bother him at all!)...it may however has STARTED because noises bothered him at the beginning of pandas - he was much more irritable and sensitive to noises.

 

He says the thought of it is stuck in his head for "like a half an hour". When we tried to do some baby steps - Had him read what to do when your brain gets stuck and I recorded myself swallowing on my phone (5 seconds - no video, audio only). I gave him the challenge of listening to that 5 times (which he thought he was read for - and I was bribing him) he went NUTs after one time. (I'm talking full on tanturm for 40 minutes- swearing, yelling, banging stuff around him room) , and told me the NEXT NIGHT that he thought about it all day long in school and couldn't get it out of his head. This was before he was on Doryx, so he's somwhat better now, but I'm not strong enough to do the therapy with him. I'm actually beginning to worry a little about my own health. The road has been so long to getting him to where he is -I feel like I'm at the end of a marathon and I've hit a wall. Even though the end is in sight I might not be able to make it - I'm gonna need someone to lead on to get to the finish line.

 

You make a good point - control is somehow involved. I've read that kids get parents involved in their rituals - like bed time rituals or other things that they make you do - opening doors for them, saying something specific to them - I'm thinking its more like that. But in my case - it isn't something he's asking me to do - its something he doens't want me to do. If I do it he gets mad at me.

[LNN]

Ok, sounds like you need a professional for ER/P. I think Storch may have a skype program for long distance therapy. Might be worth looking into rather than wasting months on bad local therapists. Again, DCMom is a good resource for this.

 

As for your own health - totally hear you. I am only now done with my nervous breakdown. For my birthday, I took myself to a naturopath. We too are at maybe mile 20 in the marathon (but who really knows - those gods with the warped sense of humor have moved the finish line on us a few times before). But no victory dance if you don't all make it across the line. So invest in a good therapy plan so you can stop accommodating this irrational demand. Invest in some health for yourself. DS isn't the only one entitled to feel good. And he can't get there without you.

[norcalmom]

Thank you LLM - good advice. I needed to read the advice on taking care - I need to give myself permission to take care of myself. Breathing deeply only helps so much!