ERP at Home

[MomWithOCDSon]

Our DS13 has been steadily improving on abx, but his OCD had achieved such intensity prior, we're realistic about how long it might take to dispense with all of the behaviors, or even the idea that he may live with some of them . . . hopefully to a much lower level . . . but still have to live with them to some extent for the rest of his life.

 

So, along with the abx, DS is participating in ERP therapy, inclusive of "homework" the therapist suggests for him based on some of the behaviors . . . predominantly contamination concerns . . . that DS admits to during therapy sessions. And when the opportunity arises, we try to throw in some "homework" of our own to help him confront some of that, as well.

 

We have a beautiful little beagle, but she's a beagle, and they are inherently musky and greasy, no matter how much you bathe them! We have pictures of him petting her, even hugging her, when he was 2 and 3 and she was a puppy, but until tonight, he hasn't actually laid a hand on her for at least 5 years. In fact, he has had fits about her brushing up against his pants legs at times because of her "greasy coat."

 

So tonight he did some exposure therapy as designated by his therapist and then he wanted to go take his shower a bit quicker after that exposure than is typically permitted. So, I made a deal with him; I suggested he just touch the dog for 5 seconds, after which I would let him go ahead and get his shower.

 

It took a lot of coaching and encouraging, but he did it! After more than 5 years of avoiding her like the plague, he actually pet her and stroked her! The poor dog was floored! But I'm gonna give her her "Therapy Dog" certificate any day now!

[Worried_Dad]

AWESOME news, Mom! Seems like our PANDAS sons are on parallel paths to recovery with the high-dose augmentin XR.

 

We were holding off on getting a dog because of our PANDAS son's extreme OCD contamination fears. Based on his progress, my wife decided it was finally time to get a puppy. (Our middle son's been through heck during his older brother's illness, and he's been desperate for a pup for many months.) Well - to our shock - our PANDAS son wanted to go along to pick out the puppy. Since we got her (a little mongrel, half chihuahua and half rat terrier), he's been holding her, cuddling with her on the couch, taking her for walks, etc. It's just a miracle to us!

 

To most people, this would seem so mundane... but this kid could not touch anyone or anything without gloves 6 months ago. We haven't been consciously doing ERP lately, but we know we may need to soon to help him break through the most stubborn OCD barriers.

 

Mom, has your son started exhibiting any ADHD tendencies? Since the OCD has receded, this has become more of an issue for our son: difficulty sitting still, focusing, concentrating on homework for any length of time. Have you seen this?

 

 

Our DS13 has been steadily improving on abx, but his OCD had achieved such intensity prior, we're realistic about how long it might take to dispense with all of the behaviors, or even the idea that he may live with some of them . . . hopefully to a much lower level . . . but still have to live with them to some extent for the rest of his life.

 

So, along with the abx, DS is participating in ERP therapy, inclusive of "homework" the therapist suggests for him based on some of the behaviors . . . predominantly contamination concerns . . . that DS admits to during therapy sessions. And when the opportunity arises, we try to throw in some "homework" of our own to help him confront some of that, as well.

 

We have a beautiful little beagle, but she's a beagle, and they are inherently musky and greasy, no matter how much you bathe them! We have pictures of him petting her, even hugging her, when he was 2 and 3 and she was a puppy, but until tonight, he hasn't actually laid a hand on her for at least 5 years. In fact, he has had fits about her brushing up against his pants legs at times because of her "greasy coat."

 

So tonight he did some exposure therapy as designated by his therapist and then he wanted to go take his shower a bit quicker after that exposure than is typically permitted. So, I made a deal with him; I suggested he just touch the dog for 5 seconds, after which I would let him go ahead and get his shower.

 

It took a lot of coaching and encouraging, but he did it! After more than 5 years of avoiding her like the plague, he actually pet her and stroked her! The poor dog was floored! But I'm gonna give her her "Therapy Dog" certificate any day now!

[Joan Pandas Mom]

My son is a similar age as yours and MomwithOCD son. I really need to start the ERP again. We had brief periods of success with it in the past. We went to Univ. of S. Florida to Dr. Storch, Dr. Murphy is also there but we didn't see her when we went last year because PANDAS wasn't confirmed for my son until Oct.2009.We also went to Raymond, ME to Dr. Fitzgibbons and Westwood Institute for Anxiety with Dr. Gorbis. They are all excellent. I just can't get my s to continue when we get home from intensive treatment and it creeps back in. His titers are still in the 700 so I have been holding off on the ERP, but rituals are increasing like crazy.

 

AWESOME news, Mom! Seems like our PANDAS sons are on parallel paths to recovery with the high-dose augmentin XR.

 

We were holding off on getting a dog because of our PANDAS son's extreme OCD contamination fears. Based on his progress, my wife decided it was finally time to get a puppy. (Our middle son's been through heck during his older brother's illness, and he's been desperate for a pup for many months.) Well - to our shock - our PANDAS son wanted to go along to pick out the puppy. Since we got her (a little mongrel, half chihuahua and half rat terrier), he's been holding her, cuddling with her on the couch, taking her for walks, etc. It's just a miracle to us!

 

To most people, this would seem so mundane... but this kid could not touch anyone or anything without gloves 6 months ago. We haven't been consciously doing ERP lately, but we know we may need to soon to help him break through the most stubborn OCD barriers.

 

Mom, has your son started exhibiting any ADHD tendencies? Since the OCD has receded, this has become more of an issue for our son: difficulty sitting still, focusing, concentrating on homework for any length of time. Have you seen this?

 

 

Our DS13 has been steadily improving on abx, but his OCD had achieved such intensity prior, we're realistic about how long it might take to dispense with all of the behaviors, or even the idea that he may live with some of them . . . hopefully to a much lower level . . . but still have to live with them to some extent for the rest of his life.

 

So, along with the abx, DS is participating in ERP therapy, inclusive of "homework" the therapist suggests for him based on some of the behaviors . . . predominantly contamination concerns . . . that DS admits to during therapy sessions. And when the opportunity arises, we try to throw in some "homework" of our own to help him confront some of that, as well.

 

We have a beautiful little beagle, but she's a beagle, and they are inherently musky and greasy, no matter how much you bathe them! We have pictures of him petting her, even hugging her, when he was 2 and 3 and she was a puppy, but until tonight, he hasn't actually laid a hand on her for at least 5 years. In fact, he has had fits about her brushing up against his pants legs at times because of her "greasy coat."

 

So tonight he did some exposure therapy as designated by his therapist and then he wanted to go take his shower a bit quicker after that exposure than is typically permitted. So, I made a deal with him; I suggested he just touch the dog for 5 seconds, after which I would let him go ahead and get his shower.

 

It took a lot of coaching and encouraging, but he did it! After more than 5 years of avoiding her like the plague, he actually pet her and stroked her! The poor dog was floored! But I'm gonna give her her "Therapy Dog" certificate any day now!

[MomWithOCDSon]

Mom, has your son started exhibiting any ADHD tendencies? Since the OCD has receded, this has become more of an issue for our son: difficulty sitting still, focusing, concentrating on homework for any length of time. Have you seen this?

 

Yes, as a matter of fact, he has. Honestly, he's frequently exhibited some ADHD-like behaviors, but the OCD behaviors were always so "front and center," we found we needed to focus primarily on them. Now, as so much of the OCD has been set aside, the ADHD-like responses seemed to kick up a notch. When he got back into school, for instance, he would report having trouble sitting in his desk or paying attention to the teacher, not because he was feeling anxious (like before), but because he just wanted/needed to be moving around. At first we thought he was just finally "feeling better" and even "feeling his oats," but it seemed to really interfere and make the school day tougher. Plus, we were seeing the same tendencies at home, especially with homework.

 

Almost 3 months ago now we started Intuniv, a non-stimulant ADHD medication along the lines of Straterra. It really seems to have helped him; within a week he reported not feeling as "antsy" in school, and we saw the positive impact at homework time, too. It is Tenex, which lowers blood pressure, so we're monitoring his blood pressure pretty closely and we make sure he eats regularly, too. For the first few days he reported a bit of a pendulum swing -- actually feeling sleepy toward the end of the school day -- but that evened out and subsided within the first 7 to 10 days of the medication.

[Joan Pandas Mom]

Have you considered any of the intensive, outpatient 3 week programs?

 

Our DS13 has been steadily improving on abx, but his OCD had achieved such intensity prior, we're realistic about how long it might take to dispense with all of the behaviors, or even the idea that he may live with some of them . . . hopefully to a much lower level . . . but still have to live with them to some extent for the rest of his life.

 

So, along with the abx, DS is participating in ERP therapy, inclusive of "homework" the therapist suggests for him based on some of the behaviors . . . predominantly contamination concerns . . . that DS admits to during therapy sessions. And when the opportunity arises, we try to throw in some "homework" of our own to help him confront some of that, as well.

 

We have a beautiful little beagle, but she's a beagle, and they are inherently musky and greasy, no matter how much you bathe them! We have pictures of him petting her, even hugging her, when he was 2 and 3 and she was a puppy, but until tonight, he hasn't actually laid a hand on her for at least 5 years. In fact, he has had fits about her brushing up against his pants legs at times because of her "greasy coat."

 

So tonight he did some exposure therapy as designated by his therapist and then he wanted to go take his shower a bit quicker after that exposure than is typically permitted. So, I made a deal with him; I suggested he just touch the dog for 5 seconds, after which I would let him go ahead and get his shower.

 

It took a lot of coaching and encouraging, but he did it! After more than 5 years of avoiding her like the plague, he actually pet her and stroked her! The poor dog was floored! But I'm gonna give her her "Therapy Dog" certificate any day now!

[MomWithOCDSon]

AWESOME news, Mom! Seems like our PANDAS sons are on parallel paths to recovery with the high-dose augmentin XR.

 

We were holding off on getting a dog because of our PANDAS son's extreme OCD contamination fears. Based on his progress, my wife decided it was finally time to get a puppy. (Our middle son's been through heck during his older brother's illness, and he's been desperate for a pup for many months.) Well - to our shock - our PANDAS son wanted to go along to pick out the puppy. Since we got her (a little mongrel, half chihuahua and half rat terrier), he's been holding her, cuddling with her on the couch, taking her for walks, etc. It's just a miracle to us!

 

To most people, this would seem so mundane... but this kid could not touch anyone or anything without gloves 6 months ago. We haven't been consciously doing ERP lately, but we know we may need to soon to help him break through the most stubborn OCD barriers.

 

And congratulations on the new addition to your family, Dad! I grew up with a menagerie, so it's hard for me to think of "home" without pets, so it's really exciting to see our kids not just accepting but actually interracting with them again! DS has always "loved" our smelly, greasy, sheddy beagle, but enduring her sensorily has been especially hard for him the last few years.

 

So, while it's a small thing to some families, it's giant for us! So glad your son is having such a great experience, and I hope to see ours follow suit in time. He's been talking about wanting a small terrier of his own -- a breed that doesn't shed, isn't inherently greasy and supposedly doesn't smell. But I told him we need to be sure he's ready for that. Seems as though he might be on his way, just like your boy!

[MomWithOCDSon]

My son is a similar age as yours and MomwithOCD son. I really need to start the ERP again. We had brief periods of success with it in the past. We went to Univ. of S. Florida to Dr. Storch, Dr. Murphy is also there but we didn't see her when we went last year because PANDAS wasn't confirmed for my son until Oct.2009.We also went to Raymond, ME to Dr. Fitzgibbons and Westwood Institute for Anxiety with Dr. Gorbis. They are all excellent. I just can't get my s to continue when we get home from intensive treatment and it creeps back in. His titers are still in the 700 so I have been holding off on the ERP, but rituals are increasing like crazy.

 

Our son had been diagnosed with regular old OCD for so many years before we discovered PANDAS and abx, it seems inevitable that some of his OCD behaviors are now essentially "learned," and I just don't think that, even with the vast improvement the abx is bringing to the table, he's going to be able to shelve all of them entirely without therapy. He had been doing cognitive behavior therapy (CBT) for the first 4 years or so of his OCD diagnosis, off and on, and while it seemed to help him quite a bit during the "waning" periods, when he was "waxing" or, we now believe, in exacerbation, it didn't help much at all. Honestly, the only service at that point was the guidance it gave US as his parents to know to try and steer him in the right directions, coach him, encourage him, rather than always lose our patience and barrage him with our frustration.

 

We began the ERP shortly after we started abx, having found this therapist through the OCD Foundation's web site. I have to say, this has been really terrific for him. This therapist helped us wean him back into school full time, and through the sessions and the homework, he's helping DS confront and dispense with some of the lingering OCD behaviors, one by one. I would highly recommend it because I think this skill set can help them not only in their recovery, but in getting through another exacerbation should it come (though, Lord willing, it won't!).

[simplygina]

If definitely does work. My son wouldn't be in the same room with garbage at one point. We had him rank the garbage cans in the house from 1 being not gross and 10 being he couldn't even contemplate looking at it. We started with the lowest level one (the bathroom believe it or not) and he had to take it out every single morning. Each week he moved up. The kitchen was really high and taking the outside can to the curb was a 10. He progressed so quickly I was amazed. One day I saw him standing in front of the TV holding the garbage can (pretty much had it hugged up to his body) totally unaware of it while he watched something on TV. I totally teared up. It was such a different place than he'd been.

 

I find the hardest behaviors are the evening and just right ones. But so far, when he decided to tackle one he does really well. Unfortunately I have noticed that if we don't stay on top of it, some of the issues come back and we have to start all over.

 

We have also been doing a lot of "mindful awareness" therapy. When he's in the middle of a compulsion I have him stop, describe what he sees, smells, touches, hears and he describes what he is doing as a running commentary. It seems to stop the compulsion really quickly. I almost think it works better for the evens and just rights. It also seems to work well when the ocd and tics morph together.

 

Congrats to you and your son! It is so great to see progress and to know that your son is capable of overcoming these things. He must be very proud of himself as well!

[Joan Pandas Mom]

I'm so glad he is improving. I too think ERP works. The first time we went for extensive treatment in 2007 for 15 days, my son came back a 9 on the YBOC scale. He started at 35, completely incapacitated with it. Coincidentally he had been on an abx prior to going for a sore thorat. My son had been treated for my years as regular OCD too, although his had a Post. strep and 471 ASO titer when this all began. ERP does work. Good luck with your continued success.

 

My son is a similar age as yours and MomwithOCD son. I really need to start the ERP again. We had brief periods of success with it in the past. We went to Univ. of S. Florida to Dr. Storch, Dr. Murphy is also there but we didn't see her when we went last year because PANDAS wasn't confirmed for my son until Oct.2009.We also went to Raymond, ME to Dr. Fitzgibbons and Westwood Institute for Anxiety with Dr. Gorbis. They are all excellent. I just can't get my s to continue when we get home from intensive treatment and it creeps back in. His titers are still in the 700 so I have been holding off on the ERP, but rituals are increasing like crazy.

 

Our son had been diagnosed with regular old OCD for so many years before we discovered PANDAS and abx, it seems inevitable that some of his OCD behaviors are now essentially "learned," and I just don't think that, even with the vast improvement the abx is bringing to the table, he's going to be able to shelve all of them entirely without therapy. He had been doing cognitive behavior therapy (CBT) for the first 4 years or so of his OCD diagnosis, off and on, and while it seemed to help him quite a bit during the "waning" periods, when he was "waxing" or, we now believe, in exacerbation, it didn't help much at all. Honestly, the only service at that point was the guidance it gave US as his parents to know to try and steer him in the right directions, coach him, encourage him, rather than always lose our patience and barrage him with our frustration.

 

We began the ERP shortly after we started abx, having found this therapist through the OCD Foundation's web site. I have to say, this has been really terrific for him. This therapist helped us wean him back into school full time, and through the sessions and the homework, he's helping DS confront and dispense with some of the lingering OCD behaviors, one by one. I would highly recommend it because I think this skill set can help them not only in their recovery, but in getting through another exacerbation should it come (though, Lord willing, it won't!).

[MomWithOCDSon]

Have you considered any of the intensive, outpatient 3 week programs?

 

I'm not sure which programs you're speaking of but would certainly be interested in some referrals.

 

In general, no, not now, anyway, because he's in such a better place these days and the OCD isn't preventing him from living his life anymore as it was prior to the abx. At its worst, though, we did try an outpatient program at a local hospital which was a dismal failure; it wasn't strictly for OCD or anxiety, though that was one of the ailments the program was supposedly designed to address. Unfortunately, it didn't, and we pulled him out after one week.

 

The only other program I'm aware of in our area is strictly an inpatient one held in Wisconsin, specifically for kids with OCD; I just think that would be traumatic for him, even at this stage.

 

In general, I'm a little wary of the heavy-duty ERP "immersion" programs, at least as I've seen them represented in documentaries and talk shows, because they seem very heavy on the "Exposure" but very light on the compassion. DS has always responded well to one-on-one, so even though this ERP therapist can be somewhat confrontational and certainly insistent at times, he does it with kindness and compassion, and he's building a rapport with DS so that he trusts in what the therapist is trying to accomplish. I'm not sure he would feel the same way about a group program because I'm not sure I feel the same way about a group program. Does that make sense?

 

We are, however, considering an OCD camp for teens that's held every summer outside of Seattle; I hear good things about it, and it is only a four-day thing, so it might not be overwhelming for DS.

[Joan Pandas Mom]

I'm so glad you have found someone good. It is hard. My S experiences seem a lot like yours. We did try the inpatient in Wisconsin for 1 DAY. I took him out after the first night there. You are right. It was way too traumatic and stressful. I have heard very good things about it, but it wasn't the right place for my S and it wasn't strictly for OCD. My S responded well to, as you said, the one-on-one. The 3 week outpatient programs we have gone to are one-on-one.

 

Have you considered any of the intensive, outpatient 3 week programs?

 

I'm not sure which programs you're speaking of but would certainly be interested in some referrals.

 

In general, no, not now, anyway, because he's in such a better place these days and the OCD isn't preventing him from living his life anymore as it was prior to the abx. At its worst, though, we did try an outpatient program at a local hospital which was a dismal failure; it wasn't strictly for OCD or anxiety, though that was one of the ailments the program was supposedly designed to address. Unfortunately, it didn't, and we pulled him out after one week.

 

The only other program I'm aware of in our area is strictly an inpatient one held in Wisconsin, specifically for kids with OCD; I just think that would be traumatic for him, even at this stage.

 

In general, I'm a little wary of the heavy-duty ERP "immersion" programs, at least as I've seen them represented in documentaries and talk shows, because they seem very heavy on the "Exposure" but very light on the compassion. DS has always responded well to one-on-one, so even though this ERP therapist can be somewhat confrontational and certainly insistent at times, he does it with kindness and compassion, and he's building a rapport with DS so that he trusts in what the therapist is trying to accomplish. I'm not sure he would feel the same way about a group program because I'm not sure I feel the same way about a group program. Does that make sense?

 

We are, however, considering an OCD camp for teens that's held every summer outside of Seattle; I hear good things about it, and it is only a four-day thing, so it might not be overwhelming for DS.

[Joan Pandas Mom]

It is so great to see the rituals shed one by one. My problem becomes keeping up with the ERP and homework. My son just stops doing it. Refuses to do it and within weeks he is really bad again. His latest obsessions are about God. They are really hard for him to work on.

 

If definitely does work. My son wouldn't be in the same room with garbage at one point. We had him rank the garbage cans in the house from 1 being not gross and 10 being he couldn't even contemplate looking at it. We started with the lowest level one (the bathroom believe it or not) and he had to take it out every single morning. Each week he moved up. The kitchen was really high and taking the outside can to the curb was a 10. He progressed so quickly I was amazed. One day I saw him standing in front of the TV holding the garbage can (pretty much had it hugged up to his body) totally unaware of it while he watched something on TV. I totally teared up. It was such a different place than he'd been.

 

I find the hardest behaviors are the evening and just right ones. But so far, when he decided to tackle one he does really well. Unfortunately I have noticed that if we don't stay on top of it, some of the issues come back and we have to start all over.

 

We have also been doing a lot of "mindful awareness" therapy. When he's in the middle of a compulsion I have him stop, describe what he sees, smells, touches, hears and he describes what he is doing as a running commentary. It seems to stop the compulsion really quickly. I almost think it works better for the evens and just rights. It also seems to work well when the ocd and tics morph together.

 

Congrats to you and your son! It is so great to see progress and to know that your son is capable of overcoming these things. He must be very proud of himself as well!

[MomWithOCDSon]

I'm so glad you have found someone good. It is hard. My S experiences seem a lot like yours. We did try the inpatient in Wisconsin for 1 DAY. I took him out after the first night there. You are right. It was way too traumatic and stressful. I have heard very good things about it, but it wasn't the right place for my S and it wasn't strictly for OCD. My S responded well to, as you said, the one-on-one. The 3 week outpatient programs we have gone to are one-on-one.

 

Oh, I see. Well, I guess we created our own "intensive program." Initially, DS was having a therapy session 3 times each week; then after about 3 weeks of that, we stepped it down to 2 times each week, and after another couple of weeks, we stepped it down to once each week. We're now going in only once every 2 weeks, with daily homework in between. We are very lucky to have found someone not only good, but to whom DS relates so well.

 

Thanks for the input, and here's wishing you and your son continued success.

[thereishope]

Yeah!!!! I'm glad he's doing well. When my son started to ovecome more of his residual OCD, some other OCD habits/rituals that stayed started to tag on for the ride and go away on their own. Let's hope that's the case for your son too!