Wilbarger Protocal - lots of questions

[Cadam]

We are back from our OT eval for Sensory processing disorder.

We were given the Wilbarger Brushing and deep pressure therapy to do at home.
No big surprise there. The OT already had a huge questionnaire and a summary of issues that I wrote up in advance. She had looked at all of that information over and had a good idea of what was going on before we even walked in the door.

Some was exactly as I had figured out but she pointed out how other things were all related too, that I hadn't picked up on.

We are dealing primarily with her vestibular system and her need for sensory impute. Her system is overactive and fatiguing, thus not there when she needs it. She needs sensory impute for calming but because she is constantly trying to find her place in space it over stimulates and fatigues. She is not able to deal with the unexpected because she is already so worn and over-stimulated in the first place.

Apparently dd still has some reflexes left over from infant-hood. I am not sure what that means to everything else and she did a few funny things on the motor testing. She was told to color between two black lines. Instead of filling in the space she drew a picture of her brother. Ummmm, not quite what the OT was looking for but she is nothing if not creative!

I will get her notes and goals write-up in a week. For now we are no the Wilbarger DPPT every 2 hours. She also wants us to do therapeutic listening. I am up for anything that is going to help but that is going to be a hard sell with dh. I will be lucky to get 6 or 8 regular OT sessions. Also our Dev. Pediatrician says there are zero studies that show it does anything and it is expensive! Somehow I don't think "but my friends on the internet think it is wonderful...." is going to sway my hard-evidence dh.

One thing at a time. Dh won't really see dd for the next two days because of our schedule. That is unusual but will give us a little time to get use to the DPPT.

How soon did Wilbarger help your child?

I just realized that dd will be at camp all week - gone from 9am to 5pm each day. I am suppose to do the brushing every 2 hours. How is that going to work? Even if my head didn't spin at the thought of going over to the camp and pulling her out of activities every 2 hours the baby takes a 3 - 4 hour nap smack in the middle of the day (I love that nap). Should I just not do the brushing until camp is over (10 days from now).

Thanks for your help

-Christina

[FabTXMomma]

We tried Wilbarger and didn't see much difference between doing it and not doing it. That does not mean it won't work for your child. Also, I was recently told by someone who knows a LOT more about OT stuff than I do, that it *can* take up to 2 years to assess whether or not the Wilbarger Protocol is working or not. She said it helped her sons greatly, but it's not something you have to do forever. I may have made a mistake by stopping, but I did get frustrated and thought it was too much for too little gain, in our case.

When Connor was in school, his teachers would do it for me. Is there no one at the camp who would be willing to administer it? I would think there should be a nurse of some kind. If your dd had to take medicine every 2 hours, she would do that. You can ask if she would be willing or if one of the camp counselors could do it. It shouldn't be too hard for them to learn how to do it properly, and when we did it, it only took a few minutes, so it shouldn't be too involved.

It's not quite true that there are zero studies showing that it works.
This is probably the best website for finding the research for yourself:
http://www.spdnetwork.org/research/index.html

Also, would your dh be willing to read "Out of Sync Child" or "Sensational Kids"? Both draw on real life case studies that illustrate what effective OT can do. It might help him to see what life would be like after OT, ya know?

HTH

[FabTXMomma]

Ok, I had to laugh at this. I followed a link from that SPD resource page that I posted a link to above, and found this as the first line of one of the articles:

"Sensory integration has provided the profession of occupational therapy with more research studies than any other theory or treatment approach."

I seriously doubt anyone would be doing it if all of those studies showed that it didn't work. So much for zero research.

Some doctors are very resistant to SI therapy. I haven't had that much of a problem with it in our area though b/c Texas Children's in Houston began providing it over 10 years ago. So it's had some time to develop as a recognized therapeutic model in our area. In other areas of the country (and sometimes just in some doctor's minds), it's still considered a "new and untried" therapy. Never mind that it's been around for over 30 years.

[Cadam]

about the therapeutic listening. She said that the research shows no effect from TL. Really, I would do anything but I have to convince dh. I think he will only really believe in the OT once he sees it.

I can't get him to agree to dietary changes either.

I will see if there is a camp nurse, that is a good idea.

-Christina