Tired of Therapy

[BeeRae22]

I had a thought today that I haven't really had before..... Maybe a deliberate break from therapy would be beneficial?

 

Dd9 has had Pans since mid Oct 2013. We didn't know what was happening initially, but did take her to a therapist to help with what she could. That first therapist openly admitted that she was not well versed in whatever was happening with our daughter at the time. But my daughter liked her, and she was in our hometown and it was a "positive appointment" each week for her.

 

In March, I finally got her in to see an evaluation team at Yale child studies. I was ecstatic, I really believed this was going to be great. We hauled ourselves over to New Haven 2x each week for about 5 months for CBT/ERP which was quite an ordeal because just the drive alone, not inc, parking, walking, picking her up at school, etc., was a full hour each way- so this was a minimum 1/2 day commitment each time. This turned out to be a huge disappointment. (I could elaborate extensively on that point, but not entirely relevant to this post!) we stopped going to Yale in August.

 

In late September/early October, I again came in contact with another therapist that seemed very promising earlier in this journey but had been unable to take on new patients due to personal reasons. Once again, I was very excited about this therapy, she seems very knowledgeable about ocd and anxiety disorders, acknowledges Pandas and Pans, and utterly crazy herself, but wonderful. I've been bringing dd to her 1x each week, and it's a reasonable drive.

 

Here's the thing though. Dd was doing GREAT until a few weeks ago when she started flairing-- everyone in our house, including her,has a cold. Her most severe issue has always been fear of choking and swallowing, and she's made tremendous progress with this in the past 6 months. For the first time, this flair is bringing with it new fears of germs/sickness/vomiting/health.

 

During her last visit to the therapist, the therapist tried to address skin picking with dd, (a mild but concerning and ongoing issue) and apparently made a comment about it being "unhealthy". Well, that sent dd right over the edge, and for the first time, she completely shut down with this therapist, Laid on the floor, wouldn't talk to her, etc.

 

This happens. I realize this is part of therapy, But the therapist wants to keep pushing her, and i dont know that i agree with pushing her while shes flairing. ? and dd now doesn't want to go back, Well, part of her does. She actually really likes her, and picked out a gift for her the other day. But I was giving her (and me!) a real break on this holiday vacation time, a break from therapists and doctors anyway, so we haven't been back yet. (This happened right before Christmas).

 

Taking this break has me thinking though..... Is all this therapy worth it? The picking up from school, cutting into our already limited evening time at home? Is it even helping??? Is going every week causing more stress by focusing on anxiety and worries instead of just trying to live a normal life? I wonder....

 

I'm wondering how many of you bring your children to therapy? How often? At what point do you say enough is enough already? Do you go every week, year after year?

 

Dd certainly still as a lot to work on. And I do think therapy has been helpful, so I'm not knocking it completely! I'm just wondering if you can reach a point where even if you still have issues, that it can be counter productive? Too much? And how do you determine if its the therapy helping, or the meds and treatment?

 

I think I am going to try cutting back to every other week and see how that feels. We can always pick up again I suppose. I'm curious to hear other's thoughts on this subject though. Is it worth it?

[searching_for_help]

Our dd did therapy with different therapists for YEARS. Never helped. Actually dredging everything up made her feel worse, and it was obvious to her that none of them understood what she was going through - some even seemed baffled by it.

 

Lots of money, time wasted. It actually made her feel like she must be a "hopeless case".

 

I know some on here have had success with therapy, but I personally don't feel a PANDAS/PANS person can be helped much during a flare. When things calm down for them, I'm sure some could benefit, but there was never a time it was affective for our dd.

[911RN]

I believe that in conditions such as PANS or any other chronic illness/state that it is OK to take a break. Sometimes it is just necesary to take a breather from the hustle and bustle and take stock in where you are, what have you achieved and where you are going. An evaluation period of sorts. I believe you answered your own question...cut back to every other week. Go from there...if better, then stay at that. You say therapy has been useful but you all sound tired. This journey a marathon not a sprint. It is OK to slow down and walk... not run for awhile.

 

My DS14 has had "issues" since age 4. 10 years is a long time. I go through periods of doing nothing and then periods of doing alot. He has to be ripe for certain situations and the things we do. Sometimes just a tincture of time is the right thing that progresses us to the next level.

[pr40]

this is what we did: we started CBT and went for several months. Decided to stop then because we did not see improvement, was too expensive and difficult to get to and, MOST IMPORTANTLY, because we figured out how we could incorporate CBT into what we do at home. The idea was to give dd strategies to cope when she is able to do that. For us that strategy is quite simple since you dd gets fixated on things and "stuck". Getting unstack requires changing her mind set, which she has learned to do by taking a moment to relax and breath deeply, by us giving her a time out and compelling her to take a moment. We also try to literally stop her actions when she gets, for the lack of a better word, hysterical.

So, try to identify if there is one thing that defines your child's exacerbations.

With skin picking, I am not sure what to suggest. it could be just one of the repetitive behaviors that will pass. Our dd goes back to picking her leap whenever she is in an exacerbation. when she is fine, the habit disappears. Ibuprofen 3x a day helps with this most of the time

[awilliams74]

We are currently in a therapy break. My understanding with CBT is there should be a start and stop schedule from the beginning with extra sessions if needed (?). When DS was 9 yo PANDAS/OCD hit. We started therapy about 6 months later - he was healing but not completely healed. We had previously purchased the book "What to do when your brain gets stuck" and he had been working with that prior to starting therapy. We went weekly for approximately 5 sessions when she referred us to someone that was a great fit for him. The new therapist was a good 40 min. away and didn't accept insurance. He did specialize more in CBT and I believe was more effective for our DS. We had a set 10 sessions with predetermined goals set in the beginning. We did deviate slightly based on progress and needs. The first few weeks we met weekly, then biweekly, the last few session being 3 weeks apart. We did have a flare in the middle of therapy and there was no amount of therapy that could have changed that - but the therapist was able to reassure him that this would happen, use his strategies as best as possible and wait for it to pass (it was reassuring and comforting to DS that if it was uncontrollable it was ok, just know it would pass as a medical illness was the cause). His OCD and PANDAS symptoms remain mild but present. We will follow up with the therapist as needed from here out. The therapist was helpful to DS and our entire family, but not sure I believe unending therapy weekly would have been helpful though.

[BeeRae22]

911m- I really liked your idea of taking a moment to really evaluate and set goals. I think it would be helpful to dd to know what we are working on, and what the plan is in general. We have just been going and going, and it seems endless! Although our primary focus has been food and eating regularly again, we've now made substantial progress with that so we were moving on to behaviors, skin picking, etc.

 

I think I would like to talk to my daughter about it. Sometimes it's easy to forget that although she's only just turned 9, that this should be about her goals as well. What can we do to help her, in her opinion? Maybe if she's more involved in the decision making about therapy it would be easier for her. And also knowing that we are going to do X amount of sessions to work on X. Interesting. Right now, the flair isn't helping, and she's wound up about going back and talking about skin picking again. I do want that issue worked on, but not at the expense of the anxiety she has about taking about it again right now, if that makes sense? The anxiety about it is worse than the actual condition. During her worst initial exacerbation it was really bad and concerning, but it really isn't so much right now anyway....

 

I also agree searching_for_help, that continual therapy may be making her feel hopeless at this point too.... Maybe just telling her that she's doing really great and doesn't need to go anymore for awhile might be helpful, right? Power of positive thinking???

 

Thanks for the responses everyone! I appreciate it!

[dcmom]

Beerae-

 

I completely agree w/ you.

 

We have had two types of therapy.

 

1- we have tried several local therapists over the years. Meet w/ them once a week and talk. Usually somewhat helpful/ supportive- but after a few sessions more anxiety and depression causing than helpful.

 

2- intense therapy at USF- meet daily for 45 min- for 5 to 15 days. Not as warm as local therapists maybe- but less "talking"- mostly in session exposures- with MAJOR tangible and lasting results!