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

demeter

100% Ritual Free in Six Weeks.....CBT/ERP Works!

Recommended Posts

Does anyone have experience with how much the Rogers or Rothman programs help prevent or cope with the neuropsychiatric symptoms from subsequent infectious flares? Do they

* keep the kids from developing OCD/anxiety... as bad

* give them tools to get back to previous baseline after Abx or IVIG?

 

Do Rogers or Rothman discuss this issue explicitly?

 

Also, what is their model of WHEN it is appropriate to do their program?

 

My naive model is that the ERP/CBT programs are best for kids whose brains aren't under autoimmune attack any more -- kids with residual OCD/anxiety after sufficient antibiotic or IVIG treatment -- maybe severe residual symptoms, but that autoimmune markers, like the Cunningham panel, are normal. While if the brain is under autoimmune attack we need treatment first for the brain to heal from the autoimmune inflammation and encephalopathy.

 

The reason I ask is that my son gets URIs every 4-6 weeks with an anxiety spike and symptom flare with each. Before he's recovered from one he gets another infection and new flare. Also, instead of classic OCD he gets overwhelming anxiety, reactive rages, sensory intolerances and (?) delusional symptoms. He often can't even identify what he's anxious about -- so how does one talk oneself out of it? And one neurological thing that he's anxious about DOES always happen -- which suggests to me his brain needs IVIG before we even think about Rogers. Does that make sense?

 

But again, what have you experienced with subsequent flares? And what does Rogers / Rothman say happens after subsequent exacerbations?

Share this post


Link to post
Share on other sites

We have done weekly therapy at Rothman, as well as the Rogers 6 week program for both of our kids. In my son's case in particular, he tends to get strep every 8 weeks or so, so finding a time when things are "normal" is non-existent. The general idea is that you need to be addressing the medical side of it - abx, IVIG, anti-inflammatories, - whatever your approach is before really attempting CBT/ERP. There are (non-PANDAS) doctors who insist it's a first line treatment - but that's not true. Doing it without addressing the medical side is like throwing deck chairs off the titanic.

 

That being said, if we waited for all of the infectious side to be completely "normal" - we'd still be waiting - 7 years later. It just doesn't happen for him.

 

But we have been successful with CBT/ERP.

 

Does it prevent the OCD from coming back in a subsequent flare? I wish, but sadly no. However it does give everyone involved tools to use to help manage the anxiety. It gave my son (at a very young age when he started CBT) a vocabulary to use to let us know when things were going wrong. Years later, he still refers to his OCD as "Harvey" - even though he's older and has a better understanding of what's happening. He could tell us "Harvey was bothering him" and we would know what to do.

 

The Rogers program specifically also has a group element to it. This helped my daughter immeasurably. It really helped her to see that other kids were going through the same thing, and even some of them had the same triggers/fears as she did. It was especially uplifting for her when in about her 4th week there a new patient joined our group - and it ended up being a boy she went to pre-school with, we hadn't seen him or his family in years - but they remembered each other and it gave them extra incentive to work hard. It was great.

 

Rogers helped with my son's sensory issues too. And for some of the anxieties and fears - it's not always trying to find out "why" they have them or to talk themselves out of them - because sometimes even they don't know, but how to respond to them. For example - my son gets very anxious at mealtimes when in a flare - to the point where he will completely stop eating. We still don't know why (not contamination, not choking fears, no clue) - but we did know that certain things tended to set him off the charts with anxiety - food touching, "broken" food (ie - cracked granola bar), or food in the wrong quantities. Rather than trying to talk to him about why these things made him anxious, and how unreasonable it really was. They simply focused on the anxiety reaction. For example - they handed him a granola bar that was crushed in the wrapper (he couldn't see it was broken but you knew it was from looking/touching the package). He had to sit at the table with that broken granola bar in the wrapper for 10 seconds, 30 seconds, slowly increasing time until he could do it for a full 5 minutes. The next step was sitting with the open broken granola bar - again increasing time until he could sit there for 5 minutes. Next step was touching it, again, until he could hold it for a certain period of time. Eventually after the end of the 6 weeks - he could eat the broken granola bar.

 

This worked for his sensory issues too. He had to put socks on and keep them on for 10 seconds, continually increasing. Prior to Rogers, he couldn't put his socks and shoes on himself because of the sensory issues - now he does it himself all the time. Does he hits snags with new infections/flares - absolutely - but we know how to handle it and what to do because of what we learned.

 

The other benefit of Rogers (personally) is that their program is family based. The entire family (if possible) participates so when you are done everyone is on the same page.

 

CBT/ERP is not a replacement for medical treatment of PANDAS/PANS - but it is a useful tool. After 7 years on this roller coaster, even when my son has an active strep infection he is far more functional than expected because of the tools we gained through CBT/ERP.

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

×
×
  • Create New...