Looking for OT stories to share

[PANDAS Occ Therapist]

Hello - I am a pediatric occupational therapist and I am going to be giving some presentations this Fall on PANDAS to occupational therapists and also to other health personnel.

 

I am also the parent of a child with PANDAS and I am an active member on this forum, though I prefer to keep my forum identity separate from my professional identity. Sheila has agreed to allow me to submit this post asking for help with PANDAS stories.

 

I am looking for stories related to occupational and physical therapy. The stories would be used in my presentations, which I am volunteering to give. I am doing this because I believe that many children with PANDAS are referred to occupational therapists without knowing that the problem is a PANDAS / PITAND exacerbation, so I want OTs (and other health professionals) to hear about PANDAS/PITANDs.

 

If you have a story relating to therapy that you would be willing to share, please send me a PM. I will then send you my contact information and specifics about the presentations, so you can decide if you want to contribute. I will not use any names or identifying information in the presentations.

 

Some examples of stories that would be helpful are be specific instances of sensory defensiveness during an exacerbation, or specific examples of handwriting changes or math changes during an exacerbation. OTs are also very interested in daily living skills, so examples of problems with dressing, bathing, eating (especially food texture issues), inability to play with friends or engage in sports or other activities - all of these would be very helpful. Also, this is your opportunity to speak up if there is anything you would want therapists to know about PANDAS!

 

The more examples I can give, the more likely it is that OTs (and other professionals) will recognize PANDAS and suggest an evaluation to families.

 

Please send me a PM by September 7 if you are interested in sharing a story. Thank you so much... and best wishes to everyone for a good school year!

[Sheila]

I just wanted to point out that this is an approved effort. The therapist is a member "buddy" of yours with over 600 posts. She needs to maintain her anonymity on the forum so she used a new member name for this request.

 

It is a short term project, so please note the deadline of Sept 7. Sheila

[Luna2]

Hi - Our daughter was dxed with PANDAS when she was 9 (3rd grade)in 2007. Her major PANDAS behaviors included difficulty swollowing, bad taste from metal eating utensils, sensitivity to texture of foods, claustraphobia, fear of the dark, difficulty holding a pencil, difficulty tracking printing on the board and copying onto papers. These were all new issues with the onset of PANDAS. The restrictive eating was the most scary and life-threatening. We worked with an OT (Denice Killingsworth, Walnut Creek, CA) for a year for sensory integration work. Alexi learned to press her thumb to the top of her mouth to help her eat; she used chop sticks instead of forks and spoons or plastic ones that she choose from the OT catalog; Denice had many swings and games to help with Alexi's balance and fears. We still have many swings on the patio, trees, etc. at home for calm Alexi to use to calm down or focus. Alexi is not symptom free but much better and we graduated from our work with Denice with many strategies and tools that continue to help with a complicated illness. Most importantly it gave us strategies that Alexi can use when their is an onset of PANDAS sxs from an exposure. If you need more specifics than this, let me know. OT, CBT and abx are our lifelines with this illness.

[tapiash]

I would love to share my sons story. I will send it to you tomorrow.

[Suzan]

I think this is great because we went to OT for 2 years and if our OT had known about PANDAS she may have recognizied it. I would love OT's to have questions about strep or other illnesses in their initial evaluation questionaire. I will PM you to see if any of our stories may help.

 

Susan

[thereishope]

Do you want stories of children who have seen an OT or just examples of what a PANDAS child experienced that the parent believes an OT could have seen at some point?

 

When my son was in his exacerbation, he had to screened by an OT (per request of his SLP) for his sensory and OCD but all paperwork on questionnaires had to be filled out how he acted prior to the exacerbation so he didn't qualify. If I had been directed to fill it out with what he was experiencing at the time, it would have been a different outcome. In hindsight, I should have asked to fill out that questionnaire twice for my own records.

 

 

Hello - I am a pediatric occupational therapist and I am going to be giving some presentations this Fall on PANDAS to occupational therapists and also to other health personnel.

 

I am also the parent of a child with PANDAS and I am an active member on this forum, though I prefer to keep my forum identity separate from my professional identity. Sheila has agreed to allow me to submit this post asking for help with PANDAS stories.

 

I am looking for stories related to occupational and physical therapy. The stories would be used in my presentations, which I am volunteering to give. I am doing this because I believe that many children with PANDAS are referred to occupational therapists without knowing that the problem is a PANDAS / PITAND exacerbation, so I want OTs (and other health professionals) to hear about PANDAS/PITANDs.

 

If you have a story relating to therapy that you would be willing to share, please send me a PM. I will then send you my contact information and specifics about the presentations, so you can decide if you want to contribute. I will not use any names or identifying information in the presentations.

 

Some examples of stories that would be helpful are be specific instances of sensory defensiveness during an exacerbation, or specific examples of handwriting changes or math changes during an exacerbation. OTs are also very interested in daily living skills, so examples of problems with dressing, bathing, eating (especially food texture issues), inability to play with friends or engage in sports or other activities - all of these would be very helpful. Also, this is your opportunity to speak up if there is anything you would want therapists to know about PANDAS!

 

The more examples I can give, the more likely it is that OTs (and other professionals) will recognize PANDAS and suggest an evaluation to families.

 

Please send me a PM by September 7 if you are interested in sharing a story. Thank you so much... and best wishes to everyone for a good school year!

Edited August 29, 2010 by Vickie

[PANDAS Occ Therapist]

Thank you to everyone who has shared stories so far. I've heard from several people and the stories have helped to validate that this talk is needed.

 

I am not limiting the type of information people send, which has been good because people are sending things I never would have thought of! I've received stories about sensory processing, handwriting, and daily living skills, articles people have written, offers of handwriting samples and pictures kids have drawn, and essays written by the children themselves. I've also received ideas for management that people have gotten when working with their OT, which will be great to share with others.

 

Vickie- The information you posted here is exactly why I want to do this. With a better understanding, we can have more appropriate evaluations and interventions.

 

Thank you all for your help!

[sptcmom]

Hi I just pmed you.You took the words right out of my thoughts. My plan is exactly the same for here in NJ though not until Ds8 is more stable and maybe in December/January.

EVERYONE who was kind enough to share their therapy stories, would it be ok to forward those to me or would it be ok to get a copy from Pandas Occ Therapist?

Here is my details

I am the clincial director of a pediatric therapy center in NJ and many of my MD collegues have requested a presentation. It would be at Robert Wood Johnson children's hospital in NJ. My son's Orthopedic surgeon and hematologist have been trying to educate themseves since we all missed Pandas in my son for 2 years. They have both requsted I have a seminar and do the grand rounds with them at the hospital in the near future.

I have also spoken to Diana P about this. She had some very good suggestions too. DS8 is 14 weeks post IVIG with Dr K and once he's on track more or less I plan on my seminar in december or Early January when the Strep here in NJ is at the highest I was told.

We offer OT, PT, SLP and ABA therapies at my clinic and collaborate closely with the VNA of central Jersey nurses to work with Early Intervention kids and local school districts as well.

I have already changed all our initial intake/initial eval forms for the upcoming school year to ask for strep and related infections and sudden onset of behaviors/tics following such an infection. We're also focusing on sinus infections, ear infections and pneumonias. The effort also is to get the school districts around aware.We have been able to identify three children to date since DS's diagnosis in March this year. Two of the three were diagnosed with PANDAS by Dr T as well and are on their way to recovery after being labelled Aspergers and PDD for about 2 years.We also have four PANDAS families in DS's school of which two are my patients and we're going to meet with the 504 committee on Sept 9th to talk about PANDAS (they wanted to put all the PANDAS kids in one class to keep things/precautions simple )

The treatment for PANDAS related OT/PT/ABA behavioral issues are diff from genuine PDD, ASD, SPD etc and need to addressed accordingly. Thats the goal at my clinic and my seminar will focus on that predominanty.

SORRY I am not trying to hijack a post. Just that I was going to request the same info in October and just wanted to avoid duplicate posts/efforts by all involved.

I also pmed Sheila for admin permission etc.

Thanks so much

Jodie

Edited August 29, 2010 by sptcmom

[sptcmom]

Sorry guys. I need to apologize. I just realized Sheila needs to approve 1st before I can make a request for info. I don't mean to hurt anybody's feelings. I also don't know how to retract my post and post later once Sheila messages me back.

Sorry again

Jodie

[Megs_Mom]

we graduated from our work with Denice with many strategies and tools that continue to help with a complicated illness. Most importantly it gave us strategies that Alexi can use when their is an onset of PANDAS sxs from an exposure. If you need more specifics than this, let me know. OT, CBT and abx are our lifelines with this illness.

 

We felt the same way. While I wish we had been diagnosed earlier, our OT was a lifesaver & we learned many ways to help. Oddly, turning Meg upside down could stop a panic attack - so she learned to stand on her head (she wins contests for this now!). Also firm (but gentle) pressure from pillows could stop extreme anxiety if we started it early enough. We learned that Meg could not "see the mid-line when writing, and that she needed a lot of sensory stimulation when sitting - she really still does not sit still well. I wish our OT had known anything about OCD or PANDAS. It would have helped us a lot. OT, ERP and abx are also our lifelines. Oh, and Pred.