Just a quick update re therapy usefulness

[dut]

Hi - I just thought I'd do an update wrt how therapy has gone.

 

As our dd9 has always responded well to abx/ibuprofen/steroids and has got back to 95% or so, we hadn't done therapy. During a flare some months ago and on the back of reading some great books ('What to do when your brain gets stuck' and 'what to do when you worry too much') our dd asked if there was someone she could talk to about these coping ideas.

 

We are seeing a local child psych who is very PANDAS aware and have been through a flare since seeing her. Biggest issue for this particular flare has been roving anxiety, coming to rest on anything that presents itself, some contamination fears and school refusal. At the height of the flare she was unwilling to apply the strategies but once we got some abx and ibuprofen going and her anxiety level dropped from super overwhelming, she was happy to use the ideas and we've found it to be very grounding for her. It has really given her something to hold onto and given me a starting point/reference point to work to rather than feeling helpless and frustrated.

 

It's been well worth it. As others have posted in the past, at the height of a flare, you may be unable to apply it but it's a great support once things start to calm even slightly.

 

I'd definitely recommend it if you can find a PANDAS savvy therapist who gets the sometimes on/off nature of this dosorder and the changing presentation.

[PowPow]

excellent news, dut!

I think therapy is way under-utilized in the PANDAS/PANS community.

Taking your kid to CBT/ERP therapy is not admitting that your kid is not PANS

I think some people feel that way. I did,for sure, at first.

I highly recommend that each PANS parent find a therapist who is BTTI trained by the OCD institute.

[kos_mom]

My DS recovered to about 90 percent of baseline on ERP alone. This was in the old days when almost nothing else was available. The bad news was that initially it was brutal and I was co-opted into the torture through homework. This was not good for the mother-son relationship! It also took two years of twice a week therapy with a 45 minute drive each way. The good news was that in the absence of any other treatment it saved our lives.

 

Luckily, so much more is available now. Most will never need to do what we did. Rather, they can first treat with abx etc. to reduce the symptom level and get their child to a good percentage of baseline and then use ERP to mop up the excess.