cognitive inflexibility

[Worried_Dad]

Hah - we're doing the same thing, Vickie!

 

Taking our son back in a couple of weeks to repeat his Y-BOCS testing so we can have a professional validate the improvement triggered purely by high-dose abx. Our therapist is a good guy, sympathetic and open-minded. With his clinical observations as "independent proof," I'm hoping we can convert some non-believers in our local medical community (who made life hard for our son over the past few years).

 

 

The psychologist told me my son's OCD had different characteristics from classic OCD as well. I actually found this very reassuring and I thought helped "prove" to those who told me it was classic OCD, possible bipolar,etc that it wasn't. The only reason I really continued to meet with the psychologist once a month was to have her offically put it in my son's med records that he was getting better w/o SSRI's and w/o CBT and to show how he was shedding the remaining problems. In the future, I didn't want anyone to say that I was seeing the improvement through "mommy eyes" and making things up.

 

 

 

 

Our son also had the inflexibility and the "ODD-style" defiance. Only things that diminished this were IVIG and high-dose augmentin XR.

 

Personally, I think this is what distinguishes PANDAS OCD from "classic" OCD. As others have mentioned, PANDAS kids don't recognize their requests or rigidities as odd; their behavior seems rational and to "make sense" to them. Sammy Maloney has mentioned this during 2 of the interviews he's done - says he doesn't remember much about his illness but that the behaviors all "made sense" to him at the time.

 

I think this is why PANDAS completely baffles many psychiatrists / psychologists. The last child psychiatrist we saw (when things were still rough before we started the high-dose XR) just shook his head and said that our son didn't resemble any case of OCD or OCD patterns of thought with which he was familiar. He didn't want to try any meds - considered it too risky - and thought it might be some form of generalized anxiety disorder (but definitely not PANDAS... sigh). He was a nice guy, but his only real advice was "go to Mayo Clinic."

 

Our psychologist (who specializes in OCD and anxiety disorders) has also been stymied by our son: thought it was OCD but "not typical" and was unable to make any progress with CBT/ERP therapies. We believe that the autoimmune attack on the basal ganglia creates a different beast: it resembles classic OCD or Tourette's but doesn't respond to drugs or therapy the same way (definitely didn't for our son).

 

I know some here have had good luck with CBT/ERP, especially when their children were not in exacerbation. Definitely worth a shot, and we all have to try whatever we can to help our kids. But - for us - the classic OCD / ODD strategies haven't worked very often, or very well.

[Megs_Mom]

Sometimes I hesitate to post here about ERP - So ERP therapy is not easy – for the child or the parent. And for children with “regular OCD”, studies show that about 40% are unable to start or complete therapy. Quite possibly, some of that 40% are children in a severe PANDAS exacerbation, who are untreated medically. And frankly, a LOT of therapist are not qualified to do ERP with young children. My advice is not to use ERP as a “cure” for PANDAS – but to use it as a tool as you are also treating medically with abx. So it depends on what you are looking for. We used ERP for years before we used abx. ERP allowed her to live a functional life – but not one that was always full of joy. Abx plus continued ERP has resulted in a joyful confident child. As I always say, I am writing to the parent that is using abx, and still needs additional tools. And for those of you who are just exploring a PANDAS diagnosis, but also need to know what the options are for treatment of standard OCD. ERP is a proven treatment for OCD. UTampa has already completed one study, showing that ERP does work for PANDAS kids. But just like regular OCD kids, it won’t work for all kids. And you should be medically treating kids. I have a gut feeling that the elasticity of a child’s brain may sometimes make OCD a habit – and that’s why some OCD seems sticky for these kids even after they are medically treated.

 

But many many parents here have repeated episodes or exacerbations per year. Their kids are desperate for some tools that will make life more manageable. And they just deserve the chance to try every tool out there. Augmentin will not work for every kid here. Some will need Zith. Some need different doses. Others need IVIG or Pex. Some have immune system dysfunctions – some do not. Some have tics. Some have severe OCD. Others have ADHD – or all of it at one time. I expect that the classifications of PANDAS will someday be much more diverse than it currently is. Some kids will succeed with ERP – others may not. But offering every tool out there is important – I certainly do not write with the assumption that ERP will work for everyone.

 

For our PANDAS child, we struggled for years to get an accurate diagnosis. While ERP helped, even with practice & dedication, she would still go from 0 to 32 in a few days. ERP was not stopping it from coming back. Now that we know she has PANDAS, this makes sense. But we started ERP within 2 weeks of her first episode at age 3.5. A normally joyful child suddenly seemed anorexic, depressed and had contamination OCD. She would lay in bed, and cry that she did not want to “be Meggie anymore”. As a result, we have had a lot of experience, and our entire family (and extended family) knows how to do ERP - that really helps with motivation.

 

You may pick & choose the tools that work best for your child. I am not sure how to classify our case, but we are still seeing “blips”. We wait for 3 days to confirm, then up the abx and start ERP again. So far, so good. She has not missed a day of school or a birthday party this year – or stopped eating. We don’t really look to the future. At this point, we are taking life one day at a time. And we are grateful for all the good ones.

 

We also validate her levels with y-boc scores, so we can show the extreme exacerbations.

[MomWithOCDSon]

Sometimes I hesitate to post here about ERP - So ERP therapy is not easy – for the child or the parent. And for children with “regular OCD”, studies show that about 40% are unable to start or complete therapy. Quite possibly, some of that 40% are children in a severe PANDAS exacerbation, who are untreated medically. And frankly, a LOT of therapist are not qualified to do ERP with young children. My advice is not to use ERP as a “cure” for PANDAS – but to use it as a tool as you are also treating medically with abx. So it depends on what you are looking for. We used ERP for years before we used abx. ERP allowed her to live a functional life – but not one that was always full of joy. Abx plus continued ERP has resulted in a joyful confident child. As I always say, I am writing to the parent that is using abx, and still needs additional tools. And for those of you who are just exploring a PANDAS diagnosis, but also need to know what the options are for treatment of standard OCD. ERP is a proven treatment for OCD. UTampa has already completed one study, showing that ERP does work for PANDAS kids. But just like regular OCD kids, it won’t work for all kids. And you should be medically treating kids. I have a gut feeling that the elasticity of a child’s brain may sometimes make OCD a habit – and that’s why some OCD seems sticky for these kids even after they are medically treated.

 

But many many parents here have repeated episodes or exacerbations per year. Their kids are desperate for some tools that will make life more manageable. And they just deserve the chance to try every tool out there. Augmentin will not work for every kid here. Some will need Zith. Some need different doses. Others need IVIG or Pex. Some have immune system dysfunctions – some do not. Some have tics. Some have severe OCD. Others have ADHD – or all of it at one time. I expect that the classifications of PANDAS will someday be much more diverse than it currently is. Some kids will succeed with ERP – others may not. But offering every tool out there is important – I certainly do not write with the assumption that ERP will work for everyone.

 

For our PANDAS child, we struggled for years to get an accurate diagnosis. While ERP helped, even with practice & dedication, she would still go from 0 to 32 in a few days. ERP was not stopping it from coming back. Now that we know she has PANDAS, this makes sense. But we started ERP within 2 weeks of her first episode at age 3.5. A normally joyful child suddenly seemed anorexic, depressed and had contamination OCD. She would lay in bed, and cry that she did not want to “be Meggie anymore”. As a result, we have had a lot of experience, and our entire family (and extended family) knows how to do ERP - that really helps with motivation.

 

You may pick & choose the tools that work best for your child. I am not sure how to classify our case, but we are still seeing “blips”. We wait for 3 days to confirm, then up the abx and start ERP again. So far, so good. She has not missed a day of school or a birthday party this year – or stopped eating. We don’t really look to the future. At this point, we are taking life one day at a time. And we are grateful for all the good ones.

 

We also validate her levels with y-boc scores, so we can show the extreme exacerbations.

 

I completely agree with and echo your sentiments regarding ERP and its possible assistance for many kids exhibiting OCD behaviors. Like you, we were dealing with OCD well before we had any thought of PANDAS, and were it not for ERP and CBT, our son's life from ages 6 through 11 would have been far more difficult. And now that he's 12 and on high-dose abx, the ERP is helping him confront some behaviors that are both a.) likely lingering or even possibly "learned" through years of coping without the help of abx, and b.) troubling him now while the abx goes to work but has yet to reach full efficacy.

 

I can understand a reluctance, particularly if PANDAS was confirmed for a family right off the bat, to turn to "mental health care" and potentially be subject to that labeling, when the evidence is clear that the genesis of the behaviors is purely medical and needs to be treated as a medical (immune) issue. That being said, the kids come first, and if ERP helps them build a skill set that can help them now, alongside the abx, and through a future exacerbation, then we're properly empowering them as fully as we can to meet the challenges.

 

Especially since I've been introduced to PANDAS and the array of potential treatments to address it . . . . I say, bring it on! Leave no stone unturned!

[thereishope]

I just want to add that I didn't really try a lot of intervention with my son during his 1st and 2nd exacerbations. It wasn't until the tailend of # 3 when I realized the OCD wasn't planning on leaving did I intervene. I agree antibiotics first and most important. Also, if things like ERP didn't work before it doesn't mean they won't work now. I know it wouldn't have been effective in the midst of an exacerbation with my son. And I know if he should get sick again, I will probably be faced with "waiting it out" for awhile. But I know there's things I can eventually do to get him over that hump and help him fully recover.

 

I agree that OCD can become a habit for some if they have the problem long enough. That is what happened with my son. It was residual OCD.

 

And, as already said, it won't work for everyone. It's the same thing with specific antibiotics, steroids, Ibuprofen, etc. But if you do deicde to try it, educate yourself before approaching the child about it. There will be anxiety involved and it won't always be easy. Also, know that you can cutomize it to your family and child. It's a time to be creative and think outside the box.

[smartyjones]

"Just right" for our DS12 is a little more ephemeral. It's more like he cannot begin a task (eating, reading, a homework problem) because something just doesn't "feel right." So he can sit for an entire math period with a quiz in front of him and not answer a single question, not because he doesn't know the material or because he's literally afraid of it, but because it doesn't "feel right" at that moment. So his OCD puts him in lock-down.

 

 

thanks for that referral to the ocd chicago website. so what does your son do about it if he does that with a math quiz or some other situation that he's in lock-down?

[MomWithOCDSon]

"Just right" for our DS12 is a little more ephemeral. It's more like he cannot begin a task (eating, reading, a homework problem) because something just doesn't "feel right." So he can sit for an entire math period with a quiz in front of him and not answer a single question, not because he doesn't know the material or because he's literally afraid of it, but because it doesn't "feel right" at that moment. So his OCD puts him in lock-down.

 

 

thanks for that referral to the ocd chicago website. so what does your son do about it if he does that with a math quiz or some other situation that he's in lock-down?

 

Because he has an IEP, the teacher generally will give him an opportunity to re-test at school when it can be worked out, or lately, they've been sending the test home with him to take at home. Because his OCD also has a scrupulosity component (i.e., he's perpetually guilt-ridden and "compulsively confessional," so he's basically incapable of cheating), they trust him and us to take the test fairly, at his own pace and in an environment more comfortable for him.

 

I will say, since the high-dose abx, he hasn't had this situation occur. It will be interesting to see how the upcoming state testing goes this coming March, as that has always been problematic for him in terms of these "just right" issues, particularly the "Extended Reader Response" essay-type questions.