Psych help or no?

[laure]

So now that my 9 year old daughter with overnight OCD in mid-July is on Augmentin, (and much improved) will she still need psych help (Cognitive Behavior Therapy, etc.) to completely get over it? She still can't touch handles of any type - faucets, car doors, house doors - and I am wondering if that goes away on its own eventually? Saving Sammy never really covered that.

Any wisdom?

[MomWithOCDSon]

So now that my 9 year old daughter with overnight OCD in mid-July is on Augmentin, (and much improved) will she still need psych help (Cognitive Behavior Therapy, etc.) to completely get over it? She still can't touch handles of any type - faucets, car doors, house doors - and I am wondering if that goes away on its own eventually? Saving Sammy never really covered that.

Any wisdom?

 

I had wondered the same thing about Sammy, so I asked Beth Maloney directly when I saw her at a conference back in the spring. The answer is yes, Sammy had the help of therapy to overcome the "residual OCD," as many PANDAS families refer to it.

 

I can tell you from experience, also, that CBT -- or more specifically ERP (Exposure Response Prevention therapy, a form of CBT) -- can help your DD with these OCD behaviors; she's avoiding things that she fears (perhaps out of fear of contamination of some kind), and the longer she avoids, the more set that behavior can become, despite the abx. It is even possible that those behaviors will "spread" or "creep" into other, related areas, as OCD is want to do, whether born of PANDAS or not.

 

Our DS made good gains in some of the most debilitating OCD behaviors once we got him on abx, but he's still needing and using ERP therapy for what remains.

[airial95]

We're doing behavior therapy with our son, because even when he's doing well, some residual OCD remains. Our doctors recommended it because in young kids OCD can almost become a "learned" behavoir. If she hasn't touched door handles in so long - it almost becomes what's "normal" to her rather than true OCD. In our case, our son is very young, we also found ourselves accomodating those things for so long (like in your case - opening doors for her since she won't touch the handles) because we were afraid of what happens when his ritual or compulsion gets "broken" (the giant meltdown). When we gave in to the OCD - we were a functional - albeit quirky family, but it became hard for us to identify when it was truly a compulsion or if he had improved to the point where we didn't need to accomodate his compulsions anymore (and he was doing them more because that's the way he "always" did things.)

 

The therapy hasn't been easy - that's for sure. But it has been helping quite a bit. We've been able to eliminate almost half of his breakfast "rituals" - which were his worst - and anyone can open a door for him now without any issue (which was also a HUGE one for us). We're starting to see him allow others to touch his trains - and he'll even play with them clockwise now (instead of ONLY counterclockwise). He's still hoarding them at certain times of the day, and has an obsession with the number 5 (every thing has to be 5). But even those things have gotten better with the therapy.

[laure]

So was it hard to persuade your kids to even go to therapy? Because 99% of the time my daughter won't even hear word one even from us about her even having a problem...the one initial counseling session I did take her to (tricked her into going) , (before PANDAS diagnosis), she was so incredibly angry I thought she was going to run out in traffic right then and there.

[peglem]

So was it hard to persuade your kids to even go to therapy? Because 99% of the time my daughter won't even hear word one even from us about her even having a problem...the one initial counseling session I did take her to (tricked her into going) , (before PANDAS diagnosis), she was so incredibly angry I thought she was going to run out in traffic right then and there.

She needs to start by seeing that these things are getting in the way of her doing what she wants/needs to do and then to see that she can overcome it. Be careful with "tricking" her- you'll need a strong relationship of trust to help her work through.

It takes an incredible amount of courage for kids to face these fears and overcome them and many times, even when the anxiety ebbs w/ recovery, the fear of fear makes it difficult to function. I mean even when there is no longer anxiety attached- to say, touching handles, the fear that the anxiety will come back (because it came out of nowhere and was uncontrollable) if they touch a handle may still be there.

[airial95]

Or little guy is so young, we didn't even tell him who he was going to see. And now he loves to "play" with Mr. Jason and Ms. Emily (he even told his sister last week before a session with Mr. Jason that "he was coming over to help fix his brain, cause it's sick and broken".

 

Ours primarily have worked with him in his "natural" environment - at day care and at home vs. an office so they can experience his behaviors and help us mitigate for them.

 

Maybe finding someone who will work with her like that, vs going into another Dr office environment, might work for her?

[thereishope]

Some may find that therapy is hard to start until the antibiotics start to work. When PANDAs kids are in a midst of a full blown exacerbation, many cannot reason and they really are not themselves. You can just sense how they are trapped and it's just blank. If you decide to see out a therapist, maybe try researching a psychologist or therapist before a psychiatrist. Try to interview them prior to your first visit, see if they are familiar with PANDAS and get an overall feel for them. I weeded out tons of therapists with a simple 5 minutes phone call. For my then 5 year old son, CBT did not work, but instead a form of ERP did work for residual OCD. Even now, I know if I ever start to see anything creeping up again, I will have "tools" I can refer to and that will hopefully help.

 

Here is a link to some useful books too...

 

http://www.latitudes.org/forums/index.php?showtopic=6616&st=0&p=52242&hl=chansky&fromsearch=1entry52242

Edited September 1, 2010 by Vickie

[MomWithOCDSon]

So was it hard to persuade your kids to even go to therapy? Because 99% of the time my daughter won't even hear word one even from us about her even having a problem...the one initial counseling session I did take her to (tricked her into going) , (before PANDAS diagnosis), she was so incredibly angry I thought she was going to run out in traffic right then and there.

 

We first began therapy when DS was 6, so he was young enough not to feel any stigma or shame at "being different." Plus, quite honestly, from what I know of my friends' kids and DS's peer group, girls tend to be a bit different and frequently more socially aware earlier.

 

I agree with Peglem, though, I wouldn't try to trick her; you need her to trust you and the choices you're making on her behalf to help her get better.

 

Now, at 13, DS knows without a doubt that therapy is helpful to him; honestly, I think he also enjoys having someone focus on him and only him for 45 minutes every week, listening to his stories and helping him work through some of his fears. And he is experiencing success, too, in terms of leaving some of his OCD fears in the dust, and success breeds investment, and investment breeds more success.

 

I think rapport is important, so you need a therapist your daughter actually likes and can eventually feel comfortable unloading to. And, like Peglem said, too, she needs to see the benefit so that she will invest in giving it a solid try. At the IOCDF conference, Dr. Jonathan Grayson posed the following question to one session: "What have you given up for your OCD?" That rang a bell for DS, as he felt like he'd given up much of his summer, free time, playing with friends, etc. to the OCD. And it made him that much more resolved to tackle it. Now, he's older than your DD, but there has to be some age-appropriate version of that which might help your DD see what she has to gain by taking on the work of therapy.

[mandyknowles]

So now that my 9 year old daughter with overnight OCD in mid-July is on Augmentin, (and much improved) will she still need psych help (Cognitive Behavior Therapy, etc.) to completely get over it? She still can't touch handles of any type - faucets, car doors, house doors - and I am wondering if that goes away on its own eventually? Saving Sammy never really covered that.

Any wisdom?

 

my daughter is 11 and she sees a counselor..she loves her and she enjoys going to see her. although it doesnt seem to make a difference whether we see her or not. She is not on any meds for that either.

[Megs_Mom]

Laure - we do ERP therapy, and it does really help. Depending on your daughter's level of anxiety and her style of learning, after PANDAS treatment, you may find that you can do some of the work at home - maybe all of it, depending on her level of need. We called it "courage work" or "brain work" for a long time. The best book to start with, for kids, is "What to do when your brain gets stuck". We also find OCD to be sticky and habit forming for young kids. I think this makes sense - they are looking for reasons why they feel so bad, and ways that they can control what is happening to them. Tie that in with brain inflamation, and you have a bad combo. I'd encourage you to give her every tool you possibly can - and ERP is one of those.

 

I do agree with the moms above - we found that we cannot trick Meg into doing anything. In general, we treat her like a small adult - she is going through so much already, and whether she likes what we are doing for her or not, she needs to trust that we will tell her about each step of the way. If you can spend a few weeks (or longer!)just educating her, without any pressure to attend an actual therapy appt, that might be wise. Read books with her, tell her stories about other children, let her do the workbook with you. I would also find an ERP therapist that will be willing to work with you as the primary coach. You can go see them on your own, and learn how to teach her the tools. She can eventually go with you to hear the "brain doctor teach mom". Our daughter did formal therapy at 8, and she spent most of the time playing with blocks & staring at the floor in the actual sessions. However, she was listening, and would then be more willing to try something with me, when she heard a doctor recommend it.

 

She loved her EPR doc - but we had a few bad experiences before that, with therapists that were really clueless about OCD. Try to find a good one, and do warn your daughter ahead of time, that if a doctor is not talented, you will continue to search for one.

 

When you read the books and talk to a therapist yourself, you'll find that there is an entire language out there that can be used to motivate a child to do therapy. It's an art, and lot of parents have this same challenge. One of the things to think about, is that the actual steps of therapy are so tiny - and the child is in charge of what they do - and they are well rewarded. So the child is brought along slowly, at a pace they can handle.

 

I like to talk to my daughter about how lucky she is that she is so smart. That therapy is easier for kids who can use their brains in amazing ways. We did things like using cotton balls and wood popsicle sticks to show her the gates in her brain that are "stuck open" because of PANDAS. These gates allow panic and OCD to flood into the rooms in your brain, and then they overflow. A little worry is good, so we don't stick our hands on a hot stove. A lot of worry stops us from doing great things that we love. Then we showed her how with "brain work" she can learn to close those gates herself. We talked a good bit about other kinds of brain challenges, and how people can learn to use another side of their brain to spell, or to walk, or even to see! Then we'd say, your work will be a little easier - you just have to train a different part of your brain to close those little gates. I read a book called "Brain Lock" - way to advanced for her, but I did show her a few pictures of the brain and how just using your brain in an effective way, can change what your brain can do. Then we discussed that someone has to teach us how to use our brains in the right way.

 

Basically, you have to make therapy less demoralizing. I like to do this with stories. Eventually, you find the story that appeals to her - and then you start to build on that. I'm sure she thinks going to a therapist is for "wierd kids". Finding the right language for her to learn about ERP is really important. Another example, is that we talk about how we learn to play piano. I remind her that you have to practice everyday, and have a really good teacher. If you just run up to the piano every few days and bang on the keys, you'll never improve. But if you go to lessons and use the music, and practice - then it's amazing what can happen! Our brains are meant to learn new things, and ERP therapy is just one of those useful things.

 

We also found that meeting other kids with OCD was very helpful. For us, we did this at the OCDFoundation's Annual Conference. Knowing that she was really NOT the only kid with this issue was very helpful to her.