OT for pandas

[smartyjones]

i'm sorry - i know this has been discussed in the past but i'm asking again.... can anyone share their experiences/opinions about OT for pandas related issues?

 

this past fall, my ds was having sensory issues -- constant movement, swinging doors, and really anything that he could touch would slide into repetitive motions. i was looking into OT as a possiblity. we then changed something in his treatment and meds and this resolved. i really don't now see things that would be that different from a 'normal' 6 year old boy as far as hyper-type movements. so, i did not follow up with any OT eval or treatment. i do still wonder how it could/would have been helpful and if it's something i should have/should pursue.

 

of course, there's also the issue of what is it that actually helps b/c if we had done OT at that time and changed med, we may have credited OT with what i now believe to be due to med change.

[MomWithOCDSon]

Hi Smarty --

 

Well, we did OT for a while, also for sensory issues, after having had a formal evaluation on that front. DS was about 8-9 at the time, and he was very resistant. He hated it, in fact, and we weren't seeing a lot of gains by virtue of the therapy, either. Maybe if he'd disliked it less, we would've seen more gains and/or stuck with it longer. But he was just overwhelmed at the time, I think, trying to deal with school, CBT/ERP therapy once or twice each week, and just trying to be a kid and have some play time too. I think he resented it.

 

In the end, we read "The Out-of-Sync Child" and "The Out-of-Sync Child Has Fun" and sort of built therapy into his everyday life with some of the ideas and exercises in the books. I admit, in the end and up 'til now, we've sort of picked our battles because there've been much bigger fish to fry in the last 18 months or so. So if he'll only wear one brand of socks, or one pair of shoes, or collarless shirts, or cargo pants but not jeans, well, so be it. At least he's not leaving the house naked!

[PANDAS Occ Therapist]

Smarty -

 

You bring up some good questions. I had posted last Fall when I was looking for parents to share OT stories with me as I was preparing to give presentations at a couple of OT conferences (see http://www.latitudes.org/forums/index.php?showtopic=9662&st=0&p=81161&fromsearch=1entry81161).

 

I wanted to let you know that I am working with a couple of other OTs and we are trying hard to get the word out to OTs about PANDAS, and we are also trying to get some research going for OT and PANDAS. I've given 3 presentations at the State and local level. Another OT and I have written an article that will be published in the Fall in OT Practice Magazine, and we are presenting a poster at the American Occupational Therapy Association Conference in Philadelphia in April. Hopefully by this time next year we will have some online resources for OTs to go to when a parent tells them their child has "PANDAS".

 

Thanks to the parents who shared stories with me last Fall, I have learned about the GOOD, BAD, and UGLY OT intervention for kids with PANDAS. Some people had lots of success with OT, but in many cases, the OT and the parent were unaware that the child had PANDAS, so the intervention was not appropriate. From what I have been hearing from parents, OT may be most helpful as follows:

 

DURING AN EXACERBATION:

OT Can help with some sensory "tools" to calm things down and help you get through the day. I do not expect that OT will "fix" anything during an exacerbation, but some parents have told me about wonderful sensory tools they learned from their OTs that have helped their kids to eat, dress, attend school, go out in public, and get through homework.

 

Also, during an exacerbation an OT could help with assistive devices to help with handwriting. Some kids benefit from low-tech things like pencil grips, slant boards, graph paper, and even putting a piece of paper with DARK vertical lines behind their regular horizontal lined paper so the kids can put one letter in each square and then skip a square between words (the nice part about this is once you remove the vertical line template from the back, you can't tell the child had any extra help and it looks like everyone else's paper!)

 

Also - (how could I forget) OTs are often the folks who evaluate and recommend high tech tools like word processors and computers for handwriting problems... AND OTs should be able to help develop strategies to reduce dysfunction due to disorganization.

 

 

AFTER AN EXACERBATION:

 

OT should be be able to do a through assessment and help to build things back up, but we really need some research on this~!. I wonder about our kid's muscle tone and underlying strength after an exacerbation, and OT should be able to help with this. Having a stable core (trunk) is essential as all other movements come from there. OT should also be able to work on handwriting and any other skill (dressing, eating, bathing, etc) after an exacerbation. I say "should" because we really need research for this... but in theory it should work!

 

 

Send me a PM if you have more questions.

 

Let us know if you end up getting OT and how it goes!

Edited February 19, 2011 by PANDAS Occ Therapist

[nicklemama]

We did OT from last June until Dec. It seemed to be working. We had "exercises" to do at home each morning and evening to help w/ all the issues. My DS was mainly a sensory seeker w/ lots of hyperactive like movements. Once he was diagnosed PANDAS and started abx, all those sensory issues disappeared and we discontinued OT.

[amyjoy]

we did lots of ot prior to pandas diagnosis, 2+ years. part for sensory integration but also because his handwriting and overall coordination had gone downhill.

we did it indoors in a pediatric ot practice, also on horseback ("hippo" or "equine" therapy) at Parkwood Farms outside of Atlanta, and also something called Outdoor Sensory Adventures, in the Atlanta area. We even did handwriting "camp" one summer.

 

It totally helped. did it help as much as treating the pandas might have?? well, who knows. it probably stopped DS's coordination from going completely down the drain as far as he would have gone without it. And it helped him to bring himself more into the effort.

 

i do believe that as kids grow with pandas it affects how they are wired and if their coordination is suffering from pandas, there may be certain things they will never do, or never learn to do, properly, if at all. plus i imagine that it is somehow ingrained or wired into them as they grow and may continue to affect them structurally. so even as the encephalitis resolves and the big symptoms go away, it seems to me that full recovery may include re-learning how to use their bodies, like re-wiring the circuitry. In this way, OT could be such a valuable tool.

[Kiera]

Hi, my ds 8 has a sensory processing disorder diagnosis since age 2, and OT helps tremendously for that. However, when he has a PANDAS exacerbation, the SPD symptoms go off the wall, with new sensitivities aswell (smells), together with the rages, irritability and meltdowns etc, he totally refuses OT during those periods but I can use some of the techniques I learned at home to help with the symptoms until he can resume OT.

[Kiera]

PS Forgot to add that my ds's OT was the one who pointed me in the direction of PANDAS when the OCD first appeared, I'd never heard of it prior to that, and it took two flareups for me to finally take it seriously! So my OT is my hero!!

[SarahJane]

I find that my son(7) has some sensory issues when he's in exacerbation & during healing phase. Then he's fine. BUT to me, if it's his brain inflammation causing the issues, then OT is not going to help. We've done the eval twice (when he was 4 & when he was 6) & both times I believe the issues arose due to PANDAS--I know it did the 2nd time. We've done OT before & he enjoys it & I don't think it hurt anything (unless he got frustrated and then it put him in a "mood"). I do think that sensory issues could be comorbid with PANDAS as a standalone dx that would remain after PANDAS symptoms are "cleared." And if there are any lingering effects, then it could help. So if that's the case, the OT is a good option. Plus, I'm not sure how many of the techniques I use naturally that make things easier since I've done lots of reading & my ds did OT...my exposure to it has very likely helped with my son. And I think OTs are a GREAT first responder for PANDAS! I plan to contact our past OTs to make sure they're aware of PANDAS. (I know the OT that did our last eval probably thought I was an awful parent because he was an emotional mess...likely thought I'd ignored the signs since we'd had the inital eval when he was young. She didn't particularly seem to believe me when I kept saying that the behaviors had just started & he wasn't usually like that. Whew!)