CBT/ERP

[Mary M]

My dd was d/c from her psychologist's service in spring of 2010 as she had made no discernable improvement over 17 weeks of CBT.

 

I have been contacting mental health practitioners today in an effort to find someone to help my dd get past her OCD after 2 HD IVIgs.

 

So far 2 psychologists have explained to me that OCD is the same regardless of the underlying cause and the CBT/ERP would be the same as well.

 

Those I called today were all on the list from the IOCDF. One was "aware" of PANDAS but said that part didn't really change his practice methodology. The other has seen a few PANDAS but uses all the same txs with PANDAS and nonPANDAS OCD.

 

My dd is one of the Dr C PK PET scan recipients (activiation in the caudate and putamen). One of the psychologists stated that PET scans are not effective tools for OCD as CBT alone can eliminate the evidence that was previously seen on a PET scan.

 

Guess I'm just hoping someone here might assure me that I'm doing the right thing adding therapy in at this point. Getting her to the appts in 2010 was a nightmare for all of us. She was worse with every visit.

 

Thoughts anyone?

Mary

from Michigan

[LNN]

My understanding is that ERP and CBT techniques are the same, regardless of traditional vs. PANS.

CBT and ERP have been very helpful in our house - but on the upswing and on the downswing of an episode. It is not very effective at the peak of an episode. The fears were just too strong.

 

So we talked about ERP strategies at the worst of times and about what the kids could/should do. If they felt up to it, they would try an exercise - maybe only delaying a compulsion by 5 seconds. And that was heralded as a success. The mere attempt to fight back, to just shift their mindset a tiny bit, to envision what small step they might attempt tomorrow - that was rewarded.

 

Then, as the OCD and anxiety showed small chinks in the armor, I'd push harder - go for 60 seconds, then 3 minutes, before giving in. The goal was never to stop doing a compulsion. That, they would do on their own or it would simply disappear. My goal was to instill the mindset, to empower them and let them know they could be the boss, not the victim.

 

So I'd say it's the same techniques. The only adaptation we made was that we set super low goals when all other symptoms were at a peak, because it was all they could handle. Then the goals got harder as they got healthier and other symptoms lessened.

 

I would PM DCMom, as she's in Florida with Drs Storch and Murphy right now with her girls, doing a 3 week intensive ERP program. Perhaps she can relay your question to the experts.

[dcmom]

ERP and CBT techniques are the same, for PANDAS and non-PANDAS OCD. These are invaluable tools for kids with pandas, and should go hand-in-hand with medical treatment, IMHO.

 

I have found it helpful to have psychs who are familiar with, or open to, pandas- because I do think there is a difference in how our kids respond (medical treatment can extremely accelerate progress, and illness can totally derail it).

 

I also have found an equal number of inadequate psychs, as I have found ones that I like.

 

We are in FL at USF's intensive OCD program.

 

It is not SO intensive, frankly, and to me seems like the only way to make real progress with ocd. It is one appt per day, five days a week, for three weeks. When we have had life-disrupting ocd, once a week just hasn't cut it. I really like our psych, as he is the combination of compassionate and understanding, frank and matter of fact, funny and tough- all at the same time. He doesn't stand for any nonsense- but is very encouraging at the same time. I have realized while we have been here, that this is the beginning of my girls therapy, not the end. But, that they will be okay. The combination of aggressive medical treatment, and consistent CBT/ERP will help them to live their lives to the fullest.

[MomWithOCDSon]

I will echo what LLM and DCMom have said: the techniques and tools are the same, and they are invaluable.

 

My DS was diagnosed with "regular OCD" (is there really such a thing?) long before we knew about PANDAS so, depending upon the circumstances and the exacerbations, he's been in and out of CBT/ERP on an as-needed basis since he was 6 (he's now 14).

 

The thing is, these are kids, and though the basic techniques are applicable across the ages, as they grow and develop and mature, the nature of the anxieties, compulsions and rituals can shift, also, so returning to therapy and the techniques at home can be necessary. My DS's Biggest Exacerbation began with crippling contamination OCD; now, two years later, his OCD is almost entirely of the scrupulosity variety (he wants to be the model citizen in every regard). OCD, whether it's created by a microbe or potentially by organic wiring, is a slippery sucker. And it can morph like an alien.

 

I also wanted to address your concern about how difficult it's been for you to get your DD to the therapy session and how she seems "worse with every visit." Facing these fears/anxieties is SO tough, and our kids have much less experience with how to deal with fears of this magnitude than we do. So the natural instinct is to AVOID . . . AVOID, AVOID, AVOID. That's what she's doing by making it hard for you to get her to the sessions. And then, when she comes out of the sessions ramped up and in distress, it's because the therapist's job is to focus her on those very fears she's been trying to avoid, and chances are, in a 45- or 60-minute session, there just isn't enough time to take her thoroughly through the steps of 1) facing the fear and 2) facing it again and again until 3) she becomes less sensitive to it (or "habituated") to the point that she's no longer agitated by it. Depending upon how raw that nerve is, or how strong the fear, it might take days or even weeks of ERP exercises to get her to the point at which she no longer reacts excessively when confronted with it.

 

So, long way of saying, sometimes it does seem as though it gets worse before it gets better. And that's when those of us who generally try to live non-confrontational, peaceful lives are tempted to skip the session or forego the ERP homework because it causes more distress . . . for the moment. We just have to hold onto the knowledge, however, that, in the long run, structured, controlled distress in small bites today will make it possible for our kids to live better, more fulfilling, less stressful lives in the future as they grow.

 

Sorry for what you're going through. It can be really tough, I know. Hang in there!

[JAG10]

My dd tried CBT at U of Penn right before PANDAS treatment 20 months ago. I think it depends on the state the child is in. My dd, at that time, was in no shape to take advantage of CBT. Her awareness level, her behavioral regression....she was so sick with pandas she was in a perpetual state of what could have passed for intoxication (and NO it was not yeast!)

 

I've just started her in therapy as she is now at a point where she can participate and benefit. It is not pure CBT, but elements of CBT I'm sure will be utilized to address some social anxiety associated with the potholes of preteen girl behavior and just the emotional baggage of all this, the ups and downs, all the doctors, ect.

 

Anyway, my only point is that in my dd's case, we had to get her to a certain point medically before we felt any therapy could be successfully utilized and worth the investment of time and money.

[Mary M]

we had to get her to a certain point medically before we felt any therapy could be successfully utilized .

 

 

This is precisely why I thought this would be a good time to start. My dd became, for lack of a better word, more and more psychotic during her spring 2010 therapy. She was just too "ill" with PANDAS to get any actual work of any kind done. SHe is certainly improved from the IVIgs but the OCD still makes life challenging for her.

Mary

from Michigan

[Mary M]

 

 

I also have found an equal number of inadequate psychs, as I have found ones that I like.

 

 

Ay, and there's the rub. I left messages for 6 different psychs. 2 phoned me back the day I called. I looked at their web sites. Just don't know who would best serve my dd. One of the psychs I spoke to yesterday was unfamilair with the use of the "thermometer" to gage fear intensity with children/teens. Yet I have read of the use of the thermometer concept in multiple books. He said he has 25 years of experience in CBT/ERP. Trial and error is probably the only way to know which psych will work best with my dd but moving from one to the next seems daunting.

Mary

from Michigan

[laure]

I am wondering if SSRIs or other meds would help at all with OCD anxiety, once medical treatment for the underlying cause has begun to work. In Saving Sammy, Beth Maloney indicates that they used Stratera (ADHD drug) and Zyprexa (commonly used for Schizophrenia) for this purpose, with great success. I was going to ask my doctor about possibly using something to help with returning to school, and contamination issues which will likely be exacerbated there.

[dcmom]

Mary- is there any possibility of doing 3 weeks in Fl?

 

If not check the provider list on the IOCDF website, as a start.

[airial95]

The CBT has been very helpful for us as well. I'll echo what everyone else has already said though - when we are in the throws of a full on exacerbation/strep infection, it's not as effective.

 

With my son, and I'm sure others here as well, we struggle with "residual" OCD - after the infection has cleared, and all other PANDAS symptoms have disappeared, the OCD sticks around like an unwanted hosue guest. In our son's case (he's still young) it's been described to us almost like a learned behavior. They perform these compulsions and rituals, or process thoughts in a certain manner initially because of the OCD, but after a while, depending on how long that particular flavor of OCD has been happening, it becomes their new "normal". He has to have 3 beverages at dinner time because that's just what you do - it's no longer solely anxiety driven - except for the fact that it's weird if he doesn't have 3 beverages.

 

Our therapist also described it like a drug addition. You start taking the pain pills because you really need them, and have pain, but eventually you start taking them because if you don't you're afraid that you'll have pain, at which point you become addicted and have to keep taking them in order to feel good at all. It's the same with the OCD - he for whatever reason, HAS to have 3 beverages or he freaks out, he knows that he had to have 3 beverages to keep the anxiety at bay, it made him feel good, so now even if he doesn't HAVE to have 3 beverages, he remembers that it made him feel good, so he just sticks with it.

 

We've had great success using the CBT/ERP techniques coming out of exposures/exacerbations and it has gotten us back to baseline much quicker with continued use of the tools.

[Mary M]

I am wondering if SSRIs or other meds would help at all with OCD anxiety, once medical treatment for the underlying cause has begun to work. In Saving Sammy, Beth Maloney indicates that they used Stratera (ADHD drug) and Zyprexa (commonly used for Schizophrenia) for this purpose, with great success. I was going to ask my doctor about possibly using something to help with returning to school, and contamination issues which will likely be exacerbated there.

 

Yet both of my dd's PANDAS docs said no to SSRIs. So many different "expert" opinions makes it very hard as a parent to know what the right course of action/treatment really is.

Mary

from Michigan

[Mary M]

Mary- is there any possibility of doing 3 weeks in Fl?

 

If not check the provider list on the IOCDF website, as a start.

 

Absolutely a possibility to participate in the 3 wk USF program.

 

All of the practitioners that I called here in MI were the ones listed for my area on the IOCDF website.

 

DCMom,

 

Does the FLA program include the parents? I ask because one of the psychs I spoke to yesterday was aghast by the fact that the prior psych did not include us (parents) in dd's sessions. We were never apprised of her "homework" other than to say she had it and knew what to do. We participated in one exposure. Now, dd was less than functional at the time so perhaps that makes it all a mute point but the one psych said he would maintain each session with all of us present.

Mary

from Michigan

[thenmama]

xx

Edited March 27, 2013 by thenmama

[airial95]

Mary- is there any possibility of doing 3 weeks in Fl?

 

If not check the provider list on the IOCDF website, as a start.

 

Absolutely a possibility to participate in the 3 wk USF program.

 

All of the practitioners that I called here in MI were the ones listed for my area on the IOCDF website.

 

DCMom,

 

Does the FLA program include the parents? I ask because one of the psychs I spoke to yesterday was aghast by the fact that the prior psych did not include us (parents) in dd's sessions. We were never apprised of her "homework" other than to say she had it and knew what to do. We participated in one exposure. Now, dd was less than functional at the time so perhaps that makes it all a mute point but the one psych said he would maintain each session with all of us present.

Mary

from Michigan

 

Mary, I don't know how the intensive program is handled, but my son's therapist is through USF (same folks who do the intensive program) and we are involved in his sessions.

[MomWithOCDSon]

I am wondering if SSRIs or other meds would help at all with OCD anxiety, once medical treatment for the underlying cause has begun to work. In Saving Sammy, Beth Maloney indicates that they used Stratera (ADHD drug) and Zyprexa (commonly used for Schizophrenia) for this purpose, with great success. I was going to ask my doctor about possibly using something to help with returning to school, and contamination issues which will likely be exacerbated there.

 

Laure --

 

We are one of those families who uses abx, supplements, CBT/ERP AND low-dose psych meds to help our DS through the worst of the OCD. It has worked for us, but, as you know, there are as many experiences as there are kids! And, from our experience as well as the peer-reviewed paper by Dr. Tanya Murphy, I can tell you that if you decide to go the SSRI route, keeping the dosage very low is key. Sometimes, even "PANDAS psychs" don't fully grasp that, so we parents have to be very vigilent about it.

 

Personally, unless your child is entirely nonfunctional, raging 24-7 or something along those lines, I wouldn't recommend Zyprexa; it is what most docs refer to as a "heavy hitter," and the side effects are not good (increased urinary frequency, dramatically increased appetite, weight gain, sonambulence, etc.). We used it, and I've read some other families have used it, for short periods in their darkest hours, many times just so their distressed kids can finally get some rest.

 

As mentioned before, though, it's important to recognize that none of these drugs actually "treats" what underlies the OCD; they just treat the symptomatic behaviors. However, in our case, we've decided that having our DS be functional, happy, attend school, get through homework, enjoy his friends, eat regular meals, sleep well, laugh, excel academically, etc. is a fair trade-off for adding some low-dose Zoloft into his treatment regimen. The hope is that, as his immune system matures and he gets well-versed and more mature in using his ERP skills and tools, we can eliminate the Zoloft over time.

 

All the best to you!