Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

Sign in to follow this  
cynditk

DBT for PANS/Lyme?

Recommended Posts

My son has had a PANS flare starting about a week ago, per high ASO titers (470) He is also in intensive treatment for Lyme, on IV antibiotics. He hasn't had a flare in a long while. I am wondering if DBT therapy geared toward anxiety might be helpful to him in dealing with the anxiety when it happens. He has a therapist who he is very close to and that has helped a lot. I know that the PANS has to get treated, but I'm wondering if the DBT might be helpful- I don't think ERP would help as he doesn't have much OCD, its generalized anxiety. I have thought about Rogers or Rothman, but I don't think he would be able to get through a daily intensive program with the fatigue and pain he experiences with Lyme. His attention span/ability to concentrate is about 1-1.5 hours.

 

Thanks for any feedback!

Share this post


Link to post
Share on other sites

Rothman is fabulous, and may be the better option if she can only focus for an hour or so a day. You get weekends off too. There is usually a wait, so I'd recommend calling them now to start investigating. Ask if anyone uses DBT and explain what's going on. They'll give you an honest assessment of whether they think they can help. We couldn't find anyone locally who could help us with school refusal, but Dr Rahman worked miracles with my son.

Share this post


Link to post
Share on other sites

Three weeks. We did get some insurance coverage - you can figure this out in advance. Not sure about age limits, but I doubt they would turn away a 21 yo. Just call and ask - the receptionists are very helpful.

Share this post


Link to post
Share on other sites

Roger's in Tampa has programs for both children and adults. They also have an intensive outpatients program, IOP, which is similar to Rothman, and a partial hospitalization program, PHP, which is full day. Both have weekends off and the length of time varies with each patient. It is a fantastic program and the doctors and therapists are fantastic. Dr Storch was at Rothman but now runs Roger's in Tampa, which has only been opened for 1 1/2 years. Yes, they take many insurances they took ours, Aetna. If you call they can help you figure out your specific coverage.

 

My 11 year old son was in the PHP program for six weeks. Our experience was beyond our expectations, so wonderful and three months post graduation our son still has zero OCD, zero anxiety, zero fears!

Share this post


Link to post
Share on other sites

So, we are right in the middle of this...we came to FL to do the Rothman program. We were underwhelmed and then realized that the doc was a fellow in training. Very nice, but we didn't travel all this way for that. We did give it a week and we did think that the staff docs were much better but they weren't really doing the treatment so we switched to Rogers. We've only done three therapy days but It's a much better fit. Our ds is in the 3 hour a day outpatient program. Insurance pays all except $20 a day copay. Also, they are sensitive to the pacing and how much the kids can handle.

Share this post


Link to post
Share on other sites

Roger's in Tampa has programs for both children and adults. They also have an intensive outpatients program, IOP, which is similar to Rothman, and a partial hospitalization program, PHP, which is full day. Both have weekends off and the length of time varies with each patient. It is a fantastic program and the doctors and therapists are fantastic. Dr Storch was at Rothman but now runs Roger's in Tampa, which has only been opened for 1 1/2 years. Yes, they take many insurances they took ours, Aetna. If you call they can help you figure out your specific coverage.

 

My 11 year old son was in the PHP program for six weeks. Our experience was beyond our expectations, so wonderful and three months post graduation our son still has zero OCD, zero anxiety, zero fears!

Congrats on the 3 month post graduation w/zero symptoms!!!

Share this post


Link to post
Share on other sites

Rothman is fabulous, and may be the better option if she can only focus for an hour or so a day. You get weekends off too. There is usually a wait, so I'd recommend calling them now to start investigating. Ask if anyone uses DBT and explain what's going on. They'll give you an honest assessment of whether they think they can help. We couldn't find anyone locally who could help us with school refusal, but Dr Rahman worked miracles with my son.

We also saw Dr. Rahman 2 years ago and felt he was amazing.

Share this post


Link to post
Share on other sites

We have recently done a phone intake for both Rothman and Rogers. We got a recommendation from both. Being that our son has one major issue (religious thoughts OCD) and our schedule for the summer...I would prefer to do the 3 week program through Rothman. Any feedback from their program? In our packet, it shows that we would be working with Dr. Tan. Anyone have feedback on this particular therapist? I don't want a situation as mentioned above with interns doing most of the work as it is an expense and time to travel from TX. We have an OCD therapist here in Dallas, but it is often difficult to get on a standing schedule and I believe the intensive sessions back to back may be a good start to turn the corner. Would love some feedback.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×
×
  • Create New...