Still Waiting for results and CBT-ERP

[kc35]

I went to a PANS Dr 2 weeks ago. He took 4 vials of blood and ran a PANS panel which included the Lyme Elisa and Bartonella test at my request. The panel included strep titers, mycoplasma, thyroid , adenovirus, CBC, EBV. I am still waiting for results since the panel is incomplete. I am not sure if the Dr is waiting for the lyme results to come in. I was told I wouldn't get any results this week. Has anyone had to wait 3 weeks for the results for this type of bloodwork? What about lyme tests through Quest, do they take 3 weeks or more? I am getting impatient.

 

I took my DD6 who has OCD symptoms to her first CBT-ERP appt yesterday. All we did was talk about the compulsions and to throw thoughts away but no exposure exercise. I realize it was the first appt but for those who have done this with their kids, should the therapist be doing the exposure with the child and working through it with them. We left with me having to do an exposure with her for one of the easier compulsions but I am still not sure of the wording to use since I didn't see it being done. Of course after we left my DD was doing her compulsions which the therapist didn't see while we were sitting in the office, since her compulsions involve walking in and out of doors, hopping over lines etc. I want to know what to expect from this and speak up so that this is helpful. I need to see the therapist in action dealing with a compulsion and the exposure so that I know how to handle it properly. Is this unreasonable? Thank you.

 

[airial95]

If you need to see the therapist in action - be sure to communicate that with them. Both of my kids have done CBT/ERP in the past. We have seen 4 different therapists (the first were through early steps, prior to my son turning 3, the next (who we loved!) moved out of the area, wasn't a fan of the 3rd, and am pleased with our current therapist).

 

Our first experience with the therapists from early steps were in home/school which we initially thought would be perfect, because they could see the behaviors/compulsions and help us deal. We were disappointed. They gave us more "parenting" techniques than true help for his OCD. But we did get some useful tips out of it.

 

We made great headway with our second therapist (until she moved!) - but it was all in office, so many of the appointments dealt with her telling us how to approach the exposures, etc. Every therapist we have seen has taken the same approach - address only 1 compulsion at a time. And with Ms. Jesse (as my son called her), our first priority was his obsession/compulsion of taking the dogs out and picking up their poop (he was 3 - not an age appropriate chore, especially with 2 large dogs). This was obviously something we couldn't re-create in her office. However, when we started to address some of his food compulsions at mealtime, we brought in favorite snacks to work right in her office. It wasn't exactly the same, but we did get to see her in action.

 

We learned enough of the skills from Ms. Jesse that we were able continue progress after she left even when new compulsions came up.

 

Our newest therapist works primarily with our daughter - her OCD was a completely different animal. She had primarily intrusive thoughts that would bring on panic attacks. No true compulsions for us to deal with. We love him, and yes, a lot of what we have had to do was primarily done at home - with his guidance. But he did work through some exposure exercises with her and us. His biggest contribution was giving my daughter a "safe" way to communicate her feelings/anxieties (we used an anxiety "thermometer" and emotion cards - she physically carried them both around for weeks to use as visual communication until she felt "safe" enough to express herself verbally).

 

But a majority of what we have had to do was at home. For example, the therapist never was able to observe her reassurance OCD (do you love me?) but we did discuss it, and how we should address it - in front of my daughter - so she knew what to expect as well.

 

Therapy worked really well for us, but only when we were also actively addressing the medical issues. In the midst of a flare from current infection, neither of my kids would have responded to therapy. However, after years of "practice", we can use the techniques learned to help when in a flare. Do they work as flawlessly as when we are coming out of an active infection? No, but it does work enough to keep them far more functional than they would have been without them.

[JoyBop]

Quest has a way if annoying doctors offices as they send messages everytime a test has been ordered, then collected, then received, ect ect ect. The office staff has to individually scan and assign each result to a dr for direction. In our office the docs all decided it was too chaotic so all the quest results come trough after the very last test comes in. Yes, you are waiting in the Lyme, no doubt. It can take weeks. Even though some if the tests are normally returned within 48 hours, most offices opt to have them bundled one time so the doctor only has to review once and the nurse only has to call once. You would think these companies would come up to speed by now!

 

As for therapists, we have been through our share. My rule is I want to stay and at least watch. I want to beta part of the process so I know what's going on. They usually don't do ERP on the first meeting as they have to get to know the child and put the list of problems into a hierarchy. Usually by the third visit they begin ERP and start at a fairly easy subject that they are guaranteed success with. If you start too easy they get bored and too hard they get traumatized so there is definitely an art to it. I would be weary of someone starting ERP on the first visit and without you being aware of the process. Forgive me if I misunderstood something in your post.

[airial95]

JoyBop makes a good point that I missed, for each of our therapists, the first couple of visits were them getting to know us and the child. Yes, we talked about the issues and the plan to address them, but it was primarily about getting everyone comfortable. It took 3 appointments with our latest therapist before my daughter would do more than squeak or grunt in the room with him. There were lots of conversations about hobbies, activities and One Direction during that time to try to make her comfortable enough to work. Her first "real" session came week 4 - and she still insisted in sitting behind the couch through the duration. Now she loves Dr. Josh and is comfortable, but we are still in every appt. (she is 7). Remember, a good portion of the therapy is related to training YOU how to deal with it as well. There are a lot of things that we do as parents that enable (for lack of a better word) the OCD - and it's just as important for our behavior to change to support the end goal.

Edited November 20, 2013 by airial95

[kc35]

Thanks for your responses. I guess I'm just expecting too much too soon. The reason I really wanted to get started is that it affects my DD walking and the compulsions are multiplying which is what the therapist said would happen if it isn't addressed early. It is hard for us to go out without her retracing steps, in and out of doors, hopping around and touching things in awkward ways multiple times etc. I guess the truth is I am having a hard time with it because it is so strange and we get some strange looks. This has all started in the last month so it is distressing since it has NEVER happened before. Just a few tics in the past that just went away within a month of showing up. Her big stretching tic that brought me to this board 2 months ago is now gone. Some days are better than others. We haven't gone out too much in the last month because of it. I guess going out would be the exposure part of the therapy so I shouldn't avoid it completely. There are just so many different compulsions that it seems daunting but perhaps the therapist will see a common thread to some of them so if one gets tackled a few others will phase out too. I hope some of them fizzle out on their own. It seems like the up and down the stairs one is fading out a bit. That's the one we have to tackle first.

 

For those of you with PANS children do you find their tics and compulsions stay the same or do they change a lot? Also do your kids say they are nervous? My DD says she is nervous a lot about strange things that shouldn't bother her. This all started after she got sick in early October with possible walking pneumonia. The OCD started one week after a 5 day course of az for the possible walking pneumonia. Before that she just had a few tics for ~ 1 month.

 

The part of the exposure that I am a little confused about is how to coax them through it. My DD doesn't like to talk about her "feelings" to do things with me. She says she wants to forget about it. So when you are going through an exposure you have to talk about it and basically "power" through the discomfort of not doing the compulsion until the "feeling" dissipates. I just don't know the right words to say to her without making things worse. I just say "You don't really want to do that because it doesn't make sense to do that, do what you really want to do" and the "feeling" will fade away and eventually won't bother you. This will be hard out in public which is where most of the OCD gets worse. Any other words of advice on wording during exposure or anything else related to doing this?

 

We have another appt next week. So we will be going once every week or two. Is that sufficient? The therapist said there will be 8 to 10 sessions. I feel like we will need more than that. What is others experience with length of time on this?

 

I guess I'll just have to be patient about the bloodwork. I haven't tried the 5 days of steroids the doctor recommended as a part of the diagnostic tool. I wanted to wait for the bloodwork results to determine whether there were any infections including lyme. I also wanted to see if any of this OCD resolves on its own a bit. All of the other tics over the past year resolved after a month or two. This has been the longest stretch of tics and now OCD we have gone through. It has been going on since mid Aug when eye blinking started which is now a thing of the past. Also right now she has a runny nose so it wouldn't be a good idea to start the steroid now anyway. Just hanging in there. Thanks again.

[JoyBop]

I can see you have a lot on your mind and hands right now. Good for you for getting the right help so quickly!

 

CBT generally has a beginning and an end, unlike talk or play therapy. There is homework that will be very specific as well. It is very optimistic for your therapist to think that 8-10 sessions will be enough, but certainly its a start. Every child is different.

 

What you are describing sounds like my son, which is anxiety and avoidance of topics or bothersome subjects. AT the end of the day, OCD is a manifestion or variant of anxiety so it makes sense that it would make her nervous. I would be very nervous if I felt I had to go through all of those motions, especially in public. Its very hard for these kids to deal with all of this.

 

I would think once every 2 weeks in totally unacceptable. I would urge for once a week, and once you are really making progress and your child is on board even twice a week is helpful to make faster progress.

 

We have been through so many therapists that I finally know the drill. Feel free to pm me if I can help further. You also might ask for a one on one visit without your daughter after the assesment. If its going through insurance, they can not legally charge you without the patient there, so ask if a phone call would be more appropriate. (that way they can be doing other things or be at home during the convo they wont get reimbursed for.) You need to know what is happening and you need to be involved, especially for homework.

[airial95]

We did once a week at first, and then down to every 2 weeks, and now just go 1x per month for my daughter. My daughter also refuses to talk about what is making her nervous - and that is what therapy has helped us with the most. It gave her tools and a vocabulary to use that made her feel "safe". For my son - he was 3 when he started - they told us to name his OCD (we call it Harvey) because it would be easier for him to dissociate things that Harvey makes him do vs. being a disobedient child. Now he can seamlessly say when things are getting rough that it's Harvey, and we know what we are dealing with.

 

Being nervous about doing exposures in public is natural, but honestly, you have to just think "screw it" about anyone who will notice. You're doing what's best for your child, and if they sense that you are nervous or hesitant, it will affect their progress.

 

The therapist should also give you a vocabulary to use as well. Surprisingly, each of our therapists did not encourage us to use too much reassurance (it's okay, it's going to pass, etc...) - but rather the opposite. Directly confront the feelings - reaffirm them. "That's pretty scary huh?". "I bet that's really freaking you out." and not to use open ended questions like "how are you feeling now". It was so hard at first - because you really do feel like a terrible parent. It's like you're FORCING your child to feel all of this anxiety and you're torturing them - but ultimately it has worked for us.

 

One of our hardest was my daughter's reassurance OCD. She didn't ask questions repeatedly, but would constantly (100+ times per day) say things like "you don't love me", "you love my brother/daddy/the dog/your van...etc. more than me", "everyone at school hates me", and so on. These would naturally prompt any parent to reassure the child that of course they are loved, and remind them of their friends, etc... But the CBT response to that is to tell the child you will only respond X amount of times each day (start big, and slowly work your way to 3 or so), after that - you're not going to answer them. Remind them periodically how many times you've already said it: "Of course I love you very much, that's the fourth time today I've said it, remember, I'm only allowed to say it one more time today". If they go over - respond with "I think you know the answer to that question", or "what have I told you before". Our therapist even told us it was okay to respond with humor and sarcasm (something that there is PLENTY of in our family!)- especially with some of the more unreasonable ones: "You're right, you figured it out, I DO love my minivan more than you!!! I was hoping it would never come out..." In our case, it would make my daughter laugh and reduce the anxiety.

 

As a parent - nothing was harder than having to refuse to tell my daughter how much I love her, and how wonderful she is. And I could still do it spontaneously - but not if she asked or fished for it.

 

You'll find that once you get used to the techniques, you can apply them regularly yourself. Even when the OCD changes (and yes - it changes for us). We typically return to regular therapy if there is something particularly stubborn happening that we aren't having luck with. A common phrase in our house is that "Mommy and Daddy don't listen to Harvey, so we won't do XYZ", or "who should you listen to, Mommy and Daddy - or Harvey". These prompts help our kids push through.

[JoyBop]

Great description posted above

For us, ERP is exposure to feared substances. For example, DS is afraid if vomit. First he would touch fake, rubber vomit with one finger with eyes closed for one second. We rate his fear thermometer ( scale if 1-10 or colors yellow to red) both before and after. Typically after a week or so your 1-3 both before and after. Then he would touch with eyes open for one second, then 3 seconds when he's mastered that. Then he would look at a cartoon character such as a baby spitting up, them listen to audio sounds of people gagging, then look at pictures of people not looking well. The child directs which item they want in which order in relationship to the stress level it causes. Keep in mind that they can work so well for so long, and then the bottom falls our when they flare and you have to change directions, start over, or abandon ship. That's where its helpful to have someone with an understanding of pandas.

 

Our current therapist is awesome with DS and he's willing to really put himself out there to get the job done which is awesome! But she totally doesn't get pandas and is quick to put a label on him when things go wrong accusing him of being "immature, attention seeking, coddled, over indulged, ect". Makes me want to go through the roof but I give up trying to explain bc I get accused of making excuses and being an enabler. But I can't bare to have to start over with someone else again, especially since he loves her and does the work. So make sure you have the right person for the get go and spend time one on one with the therapist first. A word of caution from my experience, they all say they know pandas but you soon come to realize they may not.

[Agnes26]

Great advice above. Hang in there kc35.

[airial95]

HAving PANDAS knowledgeable therapist does help. We are fortunate that the Rothman Center - and all of their therapists - are local for us (about a 45 minute drive over the big bridge). So we use them.