ERP at home?

[lsad765]

My daughter's PANS background:

 

My 6.5-year-old daughter was diagnosed with PANS by Dr. T a little over a month ago. He started her on Cefdnir right away and her symptoms started to improve about 2 weeks later. Then she got strep while on Cefdnir and switched to Azithromycin. After her strep cleared up, she went back on the Cefdnir (since Dr. T was unavailable to write a longer prescription for Azithromycin), now she is back on Azithromycin and I'm hoping to get Dr. T to write a longer prescription for it tomorrow, since it looks like she was doing even better on it than on the Cefdnir (once the strep had cleared).

 

My question:

 

In the meantime, I've been learning everything I can about ERP and the approach really speaks to me as a practical, effective one. I'm ready to start ASAP, and after reading "What To Do When Your Brain Gets Stuck" and starting to read John March's "Talking Back to OCD," I decided to employ a few of the strategies with daughter and she took to them amazingly well, to my pleasant surprise!

 

My daughters OCD symptoms are in the mild-to-moderate range (e.g., no school refusal although she went through a long spell where she begged every morning not to go and complained that she hated every day and it was so hard, etc.)

 

I would like to continue with the ERP at home approach since -- as I understand it -- there are no terribly good therapists practicing ERP in our area (Northern NJ) and I don't think the severity of her OCD merits a visit to USF, although maybe I'll change my mind about that, depending on my success at home? Also, my daughter has taken an early liking to the ERP stuff I've done at home so far, indicating, I hope, that we can see some real success. After just a couple of days, I see that along with the successes, there will be some failures too though, and I see that I probably have already once pushed her a little too hard by starting to work on fighting a second OCD problem when I should have encouraged her to have more success with the first issue before adding another. (Although in my defense, it was her, not me, who suggested moving to the next item on her list!)

 

My questions are: Has anyone else done this and could you share your story about it with me? What is your opinion about the pacing/timing of starting to fight additional issues? And do you think I really must get a capable therapist on board, if only to play a supporting role? And if so, can anyone recommend such a qualified therapist in our area?

 

Here are my daughter's main OCD problems:

 

1. She avoids going to the bathroom because after wiping she feels wet even though she isn't and because she believes she has to wash her hands for a long time afterwards, and then she believes her hands are wet even after drying her them for a long time. The whole experience is distressing to her so she simply tries to avoid it and that is why she rarely goes to the bathroom at home or at school.

 

2. She avoids most kinds of clothing, and especially underwear, because she cannot get them to feel "just right," ("just right OCD" being one of the lesser known OCD categories -- at least, we only just learned about it!).

 

3. She tries to avoid brushing teeth because she believes she has to brush her teeth for an excessively long time to be sure they are clean and so that she stay health. She believes that after she is done brushing and plenty of rinsing, she still has toothpaste in her mouth and she is afraid it will do her harm if she swallows it.

 

Other, lesser OCD symptoms:

 

1. She must cover her body at night or else a witch will in her bed will "get her."

 

2. She avoids sleeping in normal bed covers and instead has very particular blankets that must be arranged in a very specific way, because she cannot get it to feel just right (again "just right OCD").

 

3. She avoids going into any dark room or any other part of the house without me (this is more just straight worry/anxiety, not OCD).

 

4. She gets on and off irrational fears of germs (not happening now, ever since being on antibiotics).

 

5. She gets worried about a variety of things begin "dirty" (including food that is "browned," fruit that has any bruise, the surface of the dining room table at any given time, if she drops something on the floor, her baby sisters "drool" coming in contact with her or anything belonging to her.)

 

 

 

Thank you in advance for any input. In the short time since I have discovered this forum, I have used it extensively and thank everyone for generously sharing their experiences here!

[MomWithOCDSon]

Hi!

 

I definitely think you can and should do ERP at home! Even with a great, qualified therapist on board, the truth of it is that your kid is with you far more than she is anyone else, and a one-hour session, even if it were a couple of days each week, is not going to get all the ERP practice in she needs to successfully "shrink the OCD."

 

As for how many OCD "items" to take on at once, and/or how quickly you should introduce new ERP exercises, I really think it depends on the kid and their overall state of health at the time. Some of the items you noted can be done with what I think of as "natural exposures" on a daily basis . . . leaving breakfast crumbs on the table until dinner so that she has to deal with a less-than-pristine setting at dinner, giving her an age-appropriate responsibility with respect to her baby sister so that she becomes habituated to baby drool and other baby "messes," coming up with a reward chart or system to encourage her to wear those "not just right" underwear for 10 minutes before switching them out if she still can't deal with it, and stretching that 10 minutes out to 15, then 20, and more and more minutes until, again, the exposure desensitizes her to this particular form of OCD. And I would things could be taken on more or less simultaneously because they're in different aspects of her life and her day. But you can let her be your guide; if she seems overwhelmed by just one of the exercises, then maybe just stick with it until she's mastered it, and then move on.

 

Finally, though, when it comes to whether or not to engage a therapist as well, I would also add a resounding "Yes!" though you do need to find the right one. Truth is, a good therapist can help your DD and the whole family in a multitude of ways. He/she can give you support when things stall out or you're struggling with a particular behavior. He can provide that additional measure of discipline and accountability for your DD that is sometimes hard to enforce within family members alone. He can help brainstorm ideas and exercises for maybe the "stickier" behaviors.

 

Sounds like you're on the right track! Good goin'!

[Ebersolk]

Two books that I have found helpful are Freeing Your Child from OCD (Tamar Chansky) and What To Do When YOur child has OCD Aureen Pinto Wagner (she also has others for younger kids - UP and Down the worry hill which also may help).

I also think it is good to get a therapist but you also have to do it at home and reading these books helped me while we went through 4 therapists before finding the right one.

 

You need to start slowly in that most recommend coming up a fear hierarchy. Don't start at her most difficult thing to do. I would sit down and rate which is the easiest for her and do that first. I think as you start off slow and she gets some success it will help. For instance, maybe have her just leave a finger out or a foot from the covers and go from there.

 

My daughter had alot of what your daughter has (bathroom, clothes, dirty) plus much more and I can tell you that it is so much better now. She was diagnosed at 9 1/2 w/OCD and over 1 year later w/Pandas. Hang in there! Feel free to email me with any questions.

[smartyjones]

are you familiar with anxietybc.com? i've found it to be a great resource.

[michiganpandas]

I read the books with her...and did ERP on my own with her...it does help a lot......but, I will say that after we went to Rothman in Florida it was even more helpful because she heard it from someone else...and they were able to push her more (rather than me...the mom!) Now after being there I can refer back to what she learned there...or if anything comes up that is fearful for her I will always word it as a positive..."hey, that's good that it happened...you got an exposure".

 

mine is also sensitive to clothes....we learned to refer to "GUTI" there...."get used to it"...(and again, because she learned and was told this by someone else it's easier....me coming up with "get used to it" would never fly)...when I say that now she still has issues, but she usually does get used to it!.........but, I'll admit that we do just avoid a lot of the uncomfortable ones as much as possible.

[LNN]

My daughter also had a problem with underwear. She also, to this day, dislikes regular pants with zippers or pockets (too bunchy). So we let her wear leggings without underwear while we worked on other issues. So bear in mind not all compulsions need to be conquered at once. Pick the ones that are easiest and/or the most critical in terms of functioning. Put the other stuff lower on the "to do" list and let it slide for now.

 

We too do ERP at home without a therapist. If I knew of a good one who was close by, I'd love to be able to get professional coaching,as I'm sure I'm doing some of it "wrong." But our funds go toward medical first, leaving little left to shop around for an ERP therapist. I did interview two over the phone - one didn't work with young kids (mine was 4 at the time) and one didn't seem to grasp our situation and I didn't feel like educating him on my dime. But certainly call and talk to the therapists - maybe you'll get lucky. If not, here are some ideas:

 

For the bathroom avoidance - we told my daughter that if she didn't go to the bathroom at least once in x hours, she'd have to wear a pullup. She found this unacceptable and with much tears and protest, she did go to the bathroom, where she'd sit on the toilet and say she didn't have to go. I'd sometimes try to let nature work on my side - turn on the faucet, make her drink while she was on the toilet, tickle her - eventually, she'd relent and release. Then of course, the wiping would start. You can ration her toilet paper - give her xx feet and say that's all she gets. When she protests that she's still wet, put a carefree pantyliner in her underwear (or leggings or whatever it is next to her bottom). Tell her if she's still wet, the panty liner will absorb it. This of course will cause lots of tears and protest. Be firm. Also give the school nurse a change of clothes to keep on hand just in case. Your daughter doesn't need to know this. You can tell the nurse/teacher any story you want (UTI, etc). No need to get into Pandas or OCD if you don't want to.

 

For the feels right stuff - we have lots of that. For underwear, this was low on our list and she wore leggings without underwear for a year. My only requirement was that her private parts were covered. Beyond that, who cares. But when it was time to tackle this, I had her wear her underwear for 2 minutes and set a timer. If she could make it the full 2 minutes, she got a prize that was worth 10 points. If she tried even 10 seconds and then failed, she still got a prize worth 5 points. You need to celebrate the willingness to try, not just the success. Then as others say, you stretch the goal - now wear it for 3 minutes, then 5, then 10...(a few years later, she now hates to NOT wear underwear - kinda funny).

 

We treated prize points like money. At first, she wanted to spend her points at the prize store right away. Eventually, she saved her points up so she could buy more expensive rewards. For 5 points, she could reach into the prize box and pull out an item that was purchased at the Dollar Store. For 10 points, she could have junk food for breakfast. For 30 points, she could stay up 30 minutes past her bedtime. For 50 points, it was ice cream at the local restaurant. For 100 points, it was an afternoon spent as an "only child" with one parent (we'd leave the "evil" brother at home with the other parent for the day). Prizes don't have to cost money. We had things like "for 30 points, mom will do the funky dance in public", "for 25 points, you get to skip your chores for the day". The key was to have lots of rewards waiting, and not just for successful ERP tasks - but for even attempting to say no to OCD. Maybe even for "catching" OCD in the act and realizing it was an OCD thought - 3 points.

 

What you'll learn from John March is that your role is to be the coach and the cheerleader. You need to put yourself in your daughter's corner. You're not the enemy. But you also can't do this for her. She's in charge but you will reward her for trying. Make it fun. Having OCD is terrifying. Humor helps a lot.

 

For going upstairs alone, I'd initially go halfway up the stairs and sit, talking to my daughter the whole time she tried to make it past the top step and into her room to get a pair of socks. She could see me and hear me. But she had to go alone. Even if she got two steps into the upstairs hallway and came fleeing back, she got points. As long as she tried, I'd often relent and get the socks for her. But she had to try first. The goal was always to push her until she was moderately uncomfortable but not freaked. The goal changed based on that, not based on what she could or couldn't do yesterday. Eventually, I would only stand at the bottom of the stairs. If she wouldn't go get her socks - wouldn't even try - well she'd have to wear shoes without socks. It wasn't going to kill her. But I only pushed once she'd shown me she was ready to be pushed this hard. And all she had to do was try. If she went up two stairs and then froze, I'd get the socks. (I always knew a Pans flare was ending when she'd suddenly bound up the stairs as if it had never been a problem).

 

For the toothbrush - have her brush only with water. But she must brush. If she's worried about toothpaste, try baking soda. Or she must let you use a wet wash cloth. Something to clean her teeth. The consequences are too serious to give in to this one, IMO. But there can be compromise. I'd put this one toward the top of my ERP list. Tooth decay can become a Pans trigger.

 

For the "witch" in her room, my daughter had a gorilla who lived in the ceiling fan. We did a few things for this one. First, we made a joke out of it and turned it around to make the gorilla her protector. Make friends with the gorilla because all the other creepy crawlies are also afraid of the gorilla and he keeps your room safe. The gorilla is lonely and wants you to be his friend. And even if he ever did decide to scare you, you have fart power. Darling daughter of mine, I have been on the receiving end of your farts and trust me, no gorilla could survive one of your farts (lots of giggling - but it gave her "power" over her fears). We also practiced "color therapy" - using visualization, deep breathing and the soothing power of certain colors to help her relax and calm down. The idea is that your daughter defines "good colors" Let's say yellow. And a bad color - maybe black. You have her dip her toes in imaginary yellow and breath the yellow into her body - suck it up into her toes like her body is a straw. Hold for the count of 5. Then blow out, sending the black worries out of your mouth. Then suck up more yellow up to your knees, blow black out. Then suck yellow up to your belly button... you walk her thru the deep breathing until you're up to her eyeballs. This helps her relax, visualize and gives her a tool. This is our story http://www.easytolovebut.com/?s=color+of+worry&submit=Search

 

For the handwashing, I have to defer to other experts. We thankfully never had that one.

 

One other thing I found helpful was to put myself in my daughter's situation. When I found myself out of patience, I'd put on a scratchy sweater or put a small piece of dental floss between my teeth and leave it there. It's very annoying and distracting and all you want to do is make things 'feel right" again. Very hard to do something else while you're feeling uncomfortable. Or rub the hair on one eyebrow "against the grain" and push the hair toward the bridge of your nose. Feels icky. Things like this would help me have more empathy.

 

The other thing you can do is search this forum for posts on "ERP + Meg's Mom" Meg's Mom is an awesome ERP advocate who's no longer on the forum but posted many helpful threads about how to do ERP for young kids at home. They used to travel 3 hours each way, every week, for ERP therapy. She and her daughter became real pros.

[lsad765]

Thank you, everyone! I cannot thank you enough for your replies, advice, and most especially, your support! I think I -- as much as my daughter -- needed to hear that I can do this. I have gotten that here and through personal conversations with some of you -- so thank you!

 

I have renewed confidence that my daughter and I are going to beat this thing once and for all. Whether we can manage it on our own or whether we need to call in the big guns remains to be seen. I'm starting on my own in the meantime, following Dr. March's book. I told my daughter that I "talked" to a new doctor named Dr. March (she liked the name, since she's learning her months!) and he helps kids get rid of their PANDAS. She liked that, and I'm going to be referencing him as the "greater authority" when it comes to my ERP therapy. I'm hoping that will sound different and more authoritative to her than just having her Mom telling her what we need to work on all the time.

 

I also called USF and left a message for Dr. Storch to get his opinion about whether he thinks we need to go to USF or can do this on his own. I understand that he can be very helpful in evaluating the situation. Of course, if it's not necessary, I'd rather not going to Florida but I look forward to hearing his opinion on my daughter.

 

Already, my daughter has agreed to wear her "most uncomfortable" pants to school (they are actually sweatpants -- very comfortable, but not her one go-to pair of pants, the ones she relies on like a security blanket because she knows exactly what to expect of them). She even wore her socks "upside down" today, just to trick PANDAS, as she says. I couldn't be prouder of her.

 

Getting her to wear underwear and more important, to stop obsessing about the wet feeling after peeing are going to be her biggest challenges. Someone suggested that the ultimate for her, per ERP, would be to wear underwear soaked in water. Naturally, the idea sounded wild to me at first but now that I have thought about it, I can see exactly why crossing that hurdle is exactly what she needs to do to learn that she can handle the feeling and get through it to the other side. I mentioned it to my daughter, and frankly it made her look a little pale. But I wanted her to get used to the idea that some wild things are to come and that -- as you all and the books say -- "she can handle it"!

 

I'm feeling really pumped about this whole thing now, though I know there are (and have already been) some real ups and downs. I couldn't do all this without you all on this board giving needed advice and support. Thank you!!

[Mayzoo]

We have been doing some very minor ERP because we do not deal with many OCD symptoms right now. We are dealing mainly with severe separation anxiety that is also contributing to nightmares. After reading a lot on here, I decided we should name her anxiety, and make up a song that tells it to go away emphasizing how brave kiddo is and how powerless "Ivy" is. Kiddo is very song driven for learning and motivation. We will see how this works out. I am also going to start some homeopathic anxiety meds to try to aid this along.

[filinha1]

We've been using an iPhone app called Live OCD Free: http://www.liveocdfree.com It is a great adjunct to ERP therapy (it was made by an ERP therapist) and can be downloaded in an adult or kid version. My dd is 11 and uses the kid version. We have a few minor quibbles with the app (can't download your own music to the "Secret Weapons' tool and dd thought the explanation of kids defeating the "Worry Wizard" seemed too easy for something she finds so hard), but I find it to be a valuable tool. You can email progress reports from the app to a therapist and it is an unobtrusive way to practice ERP when anxieties hit away from home. Best of luck!

[Mayzoo]

We've been using an iPhone app called Live OCD Free: http://www.liveocdfree.com It is a great adjunct to ERP therapy (it was made by an ERP therapist) and can be downloaded in an adult or kid version. My dd is 11 and uses the kid version. We have a few minor quibbles with the app (can't download your own music to the "Secret Weapons' tool and dd thought the explanation of kids defeating the "Worry Wizard" seemed too easy for something she finds so hard), but I find it to be a valuable tool. You can email progress reports from the app to a therapist and it is an unobtrusive way to practice ERP when anxieties hit away from home. Best of luck!

 

For those of us without an iphone, ipad, or any other i thing, will it download and work on a computer? The only i thing I have is an older ipod. I will do some research also. Thanks

[filinha1]

We've been using an iPhone app called Live OCD Free: http://www.liveocdfree.com It is a great adjunct to ERP therapy (it was made by an ERP therapist) and can be downloaded in an adult or kid version. My dd is 11 and uses the kid version. We have a few minor quibbles with the app (can't download your own music to the "Secret Weapons' tool and dd thought the explanation of kids defeating the "Worry Wizard" seemed too easy for something she finds so hard), but I find it to be a valuable tool. You can email progress reports from the app to a therapist and it is an unobtrusive way to practice ERP when anxieties hit away from home. Best of luck!

 

For those of us without an iphone, ipad, or any other i thing, will it download and work on a computer? The only i thing I have is an older ipod. I will do some research also. Thanks

 

 

The app is only available to download for iPhone and iPad, I believe.