My Extreme Afflication 20/20

[MomWithOCDSon]

In case you guys have missed this (I know the Nick awards show is probably taking precedence for some tonight), this 20/20 is supposedly following up on some of the pediatric OCD cases it features a couple of years ago (this is how Dr. Rosenberg and Dr. Chunagi at Children's Hospital of Detroit came to my attention) and other kids with "psychotic illnesses." I'm betting they focus on that young girl with schizophrenia, for one.

 

At any rate, I'm thinking it might be interesting.

[fightingmom]

Watching now! Thanks.

[LNN]

Wow, talk about a motivator to not let little OCD things slide. Made me lose my complacency about our ERP tools!

 

Nancy - the one thing that struck me was watching those kids so jacked up during their exposures. The stress was sky high. I was wondering if you knew of anyone who looked at giving patients some sort of relaxant just prior to an exposure - like valerian root or 5-HTP - something fast acting and temporary. All I could think of was how much damage all that oxidative stress must be doing and how much harder it was to do an exposure when your coritsol, adrenalin et al was off the charts. Is any therapist advocating any type of relaxation or stress relief during an exposure?

[NancyD]

Laura, I did not see this show but in response to your comment...do you remember the study I sent you recently about using the abx d-cycloserine (DCS) and ERP?

 

"The current study re-analyzes data from a 10-session randomized controlled trial of ERP+DCS versus ERP+placebo in a sample of 22 adults with OCD. We analyzed repeated-measures mixed models with random slopes and intercepts across different intervals: sessions 1-10, 1-5, and 6-10. The results indicate that the course of ERP was 2.3 times faster over the full 10 sessions for the DCS compared to the placebo group, and nearly six times quicker in the first half of ERP. Further interpretation of the results suggests that DCS does not amplify the effects of ERP, but instead initiates treatment effects sooner in treatment."

 

I don't know the properties of DCS but I know it is a partial agonist of the neuronal NMDA receptor for glutamate and a partial agonist at the glycine receptor. Research shows its effect on anxiety, pain, and cognition. I am really interested in this abx, particularly in relation to doing ERP.

[PowPow]

Right now, my child is doing some intensive ERP and I am wondering about this also.

I am considering asking our PANDAS doc and our psychiatrist if they wil consider prescribing d-cycloserine for her. I am probably too hopeful, or desperate!, but I am going to ask.

my teenager will also be starting intensive therapy soon and I am going to ask if they wil consider it for her also, especially since she had good response from rilutek, another glutamate modulator.

[MomWithOCDSon]

Wow, talk about a motivator to not let little OCD things slide. Made me lose my complacency about our ERP tools!

 

Nancy - the one thing that struck me was watching those kids so jacked up during their exposures. The stress was sky high. I was wondering if you knew of anyone who looked at giving patients some sort of relaxant just prior to an exposure - like valerian root or 5-HTP - something fast acting and temporary. All I could think of was how much damage all that oxidative stress must be doing and how much harder it was to do an exposure when your coritsol, adrenalin et al was off the charts. Is any therapist advocating any type of relaxation or stress relief during an exposure?

 

As it turned out, the show was a 100% rerun of a show that aired about 18 months ago; I had originally thought they were going to provide an update on these kids, but they didn't, so I was disappointed in that regard. Still, DH did not see it when it first aired, so it was valuable for him.

 

I'm not aware of any therapists . . . including the very well known ones at USF, Penn, etc., . . . using any "relaxers" prior to exposure therapy. As you know, we've been at some form of ERP off and on for years, and it's never been part of a formula offered our DS. In fact, many of the "hard-boiled" ERP therapists seem to feel that the very high anxiety at the commencment of exposure is what they're after . . . so that the decrease in that anxiety as a result of the exposure is palpable and measurable. I admit, though, that I see that more with adults than with kids. With kids, I've more often seen the approach Michelle's mother took with her when it came to going into the Koh'ls store; if it's too much, you don't push and therefore the anxiety doesn't get so high that the kid cannot manage it on any level. When it comes to therapists, I'm not sure that concern over the oxidative stress has ever been part of the equation.

 

What struck DH and me, especially, was the regression of the kids when in the midst of the anxiety during the therapeutic exposure event! I mean, the normally poised, articulate 15-year-old Bridget turned into a whining 4-year-old girl, right before our eyes! Our DS used to do that, too.

[MomWithOCDSon]

Laura, I did not see this show but in response to your comment...do you remember the study I sent you recently about using the abx d-cycloserine (DCS) and ERP?

 

"The current study re-analyzes data from a 10-session randomized controlled trial of ERP+DCS versus ERP+placebo in a sample of 22 adults with OCD. We analyzed repeated-measures mixed models with random slopes and intercepts across different intervals: sessions 1-10, 1-5, and 6-10. The results indicate that the course of ERP was 2.3 times faster over the full 10 sessions for the DCS compared to the placebo group, and nearly six times quicker in the first half of ERP. Further interpretation of the results suggests that DCS does not amplify the effects of ERP, but instead initiates treatment effects sooner in treatment."

 

I don't know the properties of DCS but I know it is a partial agonist of the neuronal NMDA receptor for glutamate and a partial agonist at the glycine receptor. Research shows its effect on anxiety, pain, and cognition. I am really interested in this abx, particularly in relation to doing ERP.

 

I first heard about d-cycloserine from Dr. Storch at the IOCDF conference two years ago and became very excited about it. Turns out it had been tried on adult OCD patients more than a decade ago with some success, but then a second trial was conducted with less-meaningful clinical results, and interest in it fell away for a bit. Then Dr. Storch and his team at USF began a pediatric trial again, and the results were positive; there's a paper on it, too.

 

The trick with DCS is that it's not commonly available in the very low doses used for ERP therapy, something like 10 to 20 mg. As a tuberculosis drug, the standard pharmacy stocks it in 200 mg. tablets! So you need either a compounding pharmacy or a teaching/university therapy center to join with you in the process. We weren't successful in our market because DCS is still considered "experimental" and the very medically conservative Midwest prefers to wait until something's been "protocol" for a decade before the community is willing to jump on-board.

 

Meanwhile, beta-lactam antibiotics in general are being research for their glutamate modulating capabilities, so if you are unable to get DCS, it might be worth considering some of the other b-lactam alternatives.

[smartyjones]

I'm not aware of any therapists . . . including the very well known ones at USF, Penn, etc., . . . using any "relaxers" prior to exposure therapy. As you know, we've been at some form of ERP off and on for years, and it's never been part of a formula offered our DS. In fact, many of the "hard-boiled" ERP therapists seem to feel that the very high anxiety at the commencment of exposure is what they're after . . . so that the decrease in that anxiety as a result of the exposure is palpable and measurable. I admit, though, that I see that more with adults than with kids. With kids, I've more often seen the approach Michelle's mother took with her when it came to going into the Koh'ls store; if it's too much, you don't push and therefore the anxiety doesn't get so high that the kid cannot manage it on any level. When it comes to therapists, I'm not sure that concern over the oxidative stress has ever been part of the equation.

 

What struck DH and me, especially, was the regression of the kids when in the midst of the anxiety during the therapeutic exposure event! I mean, the normally poised, articulate 15-year-old Bridget turned into a whining 4-year-old girl, right before our eyes! Our DS used to do that, too.

 

 

i did not see the show,so my comments may not be too valid -- just wanted to mention. . . our therapist (who i think is amazing and very much a needle in a haystack in our past 3 year search) comments often for ds7 that once that amaygdala goes off -- it's EXTREMELY hard to reign back in. that is a hard-wired, survivalistic urge. some of it, i think, is that he is so young, but she says she works that way with adults too, that it's very hard for them to control also. so, her goal is not so much changing that inappropriate instinct, but knowning it's there and having coping mechanisms to work with it when it does start to kick in.

 

so -- the goal for her, is to avoid the extreme reaction -- not try to get used to working with it when it happens-- but working with heeding the warning signs and finding tools to manipulate the situation so avoid the wild situation and problem solve at a lower level. okay -- avoid may be a bad use of word -- i mean - do exposure to a reasonable level and not push it over the edge.

 

 

we were just talking the other day that she does not beleive that having an anxiety prone person in an anxiety situation (such as troubling school environment) repeatedly is necessarily going to have them get over it. they need other techniques to deal with it and work with it.

 

 

this is very appropo in our situation -- i realize all situations are different.

[dcmom]

Just to chime in

 

Our totally gifted ERP therapist told me if you meet an erp therapist who talks about relaxation.....run.

 

The kids have to learn the anxiety curve.

 

This being said, he did however intuitively seem to know JUST how far to go, take them to the edge, yet not over. This is done by breaking the ocd down into baby steps. I think that for pandas- if one was concerned about stress- which IMHO is a VERY valid concern- I think dosing with advil or other anti inflammatories could be helpful....

[NancyD]

Interesting. Thanks for this info, Nancy. I could have our compounding pharmacy fill it for me, if need be. My DD16 just got accepted into the OCD Insititute, where they do ERP, so I will talk with their medical director, Dr. Jenike, to see if they would consider trying it there.

 

Laura, I did not see this show but in response to your comment...do you remember the study I sent you recently about using the abx d-cycloserine (DCS) and ERP?

 

"The current study re-analyzes data from a 10-session randomized controlled trial of ERP+DCS versus ERP+placebo in a sample of 22 adults with OCD. We analyzed repeated-measures mixed models with random slopes and intercepts across different intervals: sessions 1-10, 1-5, and 6-10. The results indicate that the course of ERP was 2.3 times faster over the full 10 sessions for the DCS compared to the placebo group, and nearly six times quicker in the first half of ERP. Further interpretation of the results suggests that DCS does not amplify the effects of ERP, but instead initiates treatment effects sooner in treatment."

 

I don't know the properties of DCS but I know it is a partial agonist of the neuronal NMDA receptor for glutamate and a partial agonist at the glycine receptor. Research shows its effect on anxiety, pain, and cognition. I am really interested in this abx, particularly in relation to doing ERP.

 

I first heard about d-cycloserine from Dr. Storch at the IOCDF conference two years ago and became very excited about it. Turns out it had been tried on adult OCD patients more than a decade ago with some success, but then a second trial was conducted with less-meaningful clinical results, and interest in it fell away for a bit. Then Dr. Storch and his team at USF began a pediatric trial again, and the results were positive; there's a paper on it, too.

 

The trick with DCS is that it's not commonly available in the very low doses used for ERP therapy, something like 10 to 20 mg. As a tuberculosis drug, the standard pharmacy stocks it in 200 mg. tablets! So you need either a compounding pharmacy or a teaching/university therapy center to join with you in the process. We weren't successful in our market because DCS is still considered "experimental" and the very medically conservative Midwest prefers to wait until something's been "protocol" for a decade before the community is willing to jump on-board.

 

Meanwhile, beta-lactam antibiotics in general are being research for their glutamate modulating capabilities, so if you are unable to get DCS, it might be worth considering some of the other b-lactam alternatives.

[MomWithOCDSon]

Interesting. Thanks for this info, Nancy. I could have our compounding pharmacy fill it for me, if need be. My DD16 just got accepted into the OCD Insititute, where they do ERP, so I will talk with their medical director, Dr. Jenike, to see if they would consider trying it there.

 

I would think your chances with Jenike will be pretty good; he's up on the latest research and I know that, through the IOCDF as well as probably other academic routes, he's in touch with Dr. Storch at USF.

 

I'll be very interested to hear how it goes at the OCD Institute, so please keep us posted!

[LNN]

Our totally gifted ERP therapist told me if you meet an erp therapist who talks about relaxation.....run.

 

The kids have to learn the anxiety curve.

 

This being said, he did however intuitively seem to know JUST how far to go, take them to the edge, yet not over. This is done by breaking the ocd down into baby steps. I think that for pandas- if one was concerned about stress- which IMHO is a VERY valid concern- I think dosing with advil or other anti inflammatories could be helpful....

 

Curious about this comment. I totally get how you need them to face their anxiety and conquer it. But the extreme anxiety shown in the 20/20 ERP sessions seemed so so high. I couldn't imagine trying to make any progress with my kids if they were that high on the scale. So intuitively, it feels like helping them lower their anxiety with breathing or short acting relaxants in order to accomplish more in a session - wouldn't that be similar to the thinking of using both an SSRI and ERP to make the most progress? That sometimes a fear can be so strong that you need the help of a medication to start to take those baby steps? Wouldn't learning deep breathing be a type of "learning to control your emotions and reactions" akin to other CBT strategies?

 

I get that ERP is a very specific type of CBT to extinguish the obsession and compulsions. Just not clear on why things to help you relax can't done along with it.

 

Also thinking of how oxidative stress can change the brain chemistry and if that couldn't bring its own set of problems if allowed to skyrocket. Just trying to understand it all better.

[MomWithOCDSon]

Our totally gifted ERP therapist told me if you meet an erp therapist who talks about relaxation.....run.

 

The kids have to learn the anxiety curve.

 

This being said, he did however intuitively seem to know JUST how far to go, take them to the edge, yet not over. This is done by breaking the ocd down into baby steps. I think that for pandas- if one was concerned about stress- which IMHO is a VERY valid concern- I think dosing with advil or other anti inflammatories could be helpful....

 

Curious about this comment. I totally get how you need them to face their anxiety and conquer it. But the extreme anxiety shown in the 20/20 ERP sessions seemed so so high. I couldn't imagine trying to make any progress with my kids if they were that high on the scale. So intuitively, it feels like helping them lower their anxiety with breathing or short acting relaxants in order to accomplish more in a session - wouldn't that be similar to the thinking of using both an SSRI and ERP to make the most progress? That sometimes a fear can be so strong that you need the help of a medication to start to take those baby steps? Wouldn't learning deep breathing be a type of "learning to control your emotions and reactions" akin to other CBT strategies?

 

I get that ERP is a very specific type of CBT to extinguish the obsession and compulsions. Just not clear on why things to help you relax can't done along with it.

 

Also thinking of how oxidative stress can change the brain chemistry and if that couldn't bring its own set of problems if allowed to skyrocket. Just trying to understand it all better.

 

Laura -- I'm sure dcmom will have some more enlightening things to add from her experiences at USF. I completely see your point and agree that I think many (if not most) therapists and psychs reach for the SSRIs and sometimes mood stabilizers to give kids "an edge" against the OCD and make the therapy more manageable and productive when the kids are so anxious that there doesn't seem to be any way for productive ERP without that assistance. I know for a fact that's why my DS was started on SSRIs.

 

So, to the extent that supplements (like valerian or ibuprofen, or even longer-scope ones like inositol) could help a child learn more and manage better through therapy, I can't imagine any therapist or psych worth their weight would have an objection to it. I just don't think they've been trained to think of those methods as first line responses, so I guess it's up to us parents to bring those into the picture.

 

I will offer, however, that our psych feels that a number of the "non-psych" supplements like SAMe and St. John's Wort ARE, however, actually psychiatric medicines, and her objection to them is that a) they're not regulated and she's not trained in their use and/or dosage. So she won't recommend them or prescribe them in her practice. She does, however, deal with our using them (currently, NAC is one of those that she considers to be an unregulated psychiatric substance), but we just have to disclose it to her so that she doesn't "double-dip" on medicinal responses for DS.

 

When it comes to the value-versus-risk of some of the more intense ERP, even after years of the stuff, I remain on the fence. Like dcmom, we've seen some great results, even with exposures that were initially very difficult for DS but, after 8 or 10 specific exposures, melted away into the ether as though he'd never had that particular fear/anxiety to begin with. But we've also run into some for which those sorts of direct exposures have not worked well, either in terms of "sticking" or successfully having his anxiety over the fear reduce over time with the exposure exercises. Some, like the infamous "chewing gum exercise" at the IOCDF conference in DC, were abysmal failures and seemed to only stoke the OCD's fire.

 

When I lay it all out, I think dcmom has a very solid point: that you need a good therapist and the ability at home to know where the edge of the cliff is, and lead your kid to it without knocking him/her off. If the kid doesn't get a good experience of having a strong fear that successfully subsides with direct but compassionate exposure to it, then it would seem their confidence in the process, and their confidence in their own ability to manage even the biggest of fears, will suffer for it. But, as you've suggested, that has to be weighed against the outlay, the oxidative stress during the process.

 

All this weighing and balancing and trying to keep things level!

[mkur]

I found the following comment by one of the doctors interesting: He said that OCD could be low or high glutmate levels. How? You (referring to myself) would think it would be one or the other. For example: Dopamine low=parkinson and high=tourettes. I read somewhere that low glutmate can cause high dopamine levels. So confusing....

[MomWithOCDSon]

I found the following comment by one of the doctors interesting: He said that OCD could be low or high glutmate levels. How? You (referring to myself) would think it would be one or the other. For example: Dopamine low=parkinson and high=tourettes. I read somewhere that low glutmate can cause high dopamine levels. So confusing....

 

What was left out of this particular show's editing was some information that Dr. Rosenberg of Children's Hospital in Detroit had said elsewhere; honestly can't recall if it was in the first airing of this story, or if it was in subsequent papers published or what. But he actually found higher levels of glutamate in the caudate nucleus of the brain of children with OCD, the same caudate nucleus that Swedo has noted as "enlarged" in some kids she's treated for PANDAS.

 

Here's a link to an excerpt of a book authored by Rosenberg that addresses this. I believe I have his research paper, or an abstract of it, stored somewhere; I'll just have to search for a bit in order to retrieve it.

 

Rosenberg - Glutamate in the Caudate Nucleus