Neurofeedback

[Allison]

I'm starting neurofeedback sessions for myself and the practioner has some Pandas experience. I was wondering if anyone out ther can share any experience with it?

 

I also found an Australian practioner who talks about helping Pandas kids with neurofeedback, so I think it's something that could help.

[mom2gsd]

We have done Neurofeedback on my son. He is minmal verbal but can communicate now in writing (on a white board), he continued to tell us that his brain felt so much more clear during treatments. We only did 20 tx, being so expensive, we just couldn't continue at $100 per tx, that insurance would not cover. I hope to go back to them one day, I do believe it helped him. BUT, even though the doctor that gave the tx said it would get rid of his PANDAS, IT DID NOT! I had researched Neurofeedback and emailed many brain researchers in the US, and they all agreed that Neurofeedback was a great tool to help re-map the brain. The best part of the whole thing was having the QEEG done, my son with asd has minimal speech, but I have always believed that he was "in there" and I knew he was intelligent, his QEEG IQ showed him in the 140's and that he had high verbal skills. In fact the doctor said to me "his QEEG shows he doesn't even have an autistic brain, may have ASP, but I would say he's been misdiagnosed". What a thing to hear when your child is so disabled with "something", I don't know what he has, but it has made me question everything....feeling like we had been on the wrong path for years and years. What he has does look like autism but I am beginning to think he may have had PANDAS all along.

[lynn]

My son has tics, some ADHD, mood issues and OCD. We took him to a carefully researched neurofeedback practitioner. He told us that he could likely treat the ADHD, but that the other problems were difficult to treat with neuro because they were very deep in the brain. At that time I wasn't aware of PANDAS. He took insurance for the treatments--not sure how that was coded.

 

We went for an initial 20 sessions, aimed primarily at ADHD. It did have some effect on ADHD--it wasn't the startling OMG type of improvement, but it was there. During this time, however, his tics and OCD became substantially worse. We then did the brain mapping again and the map was now different with the problem area appearing to be on the left side of the brain but very deep. We did a further 15 sessions aimed at the tics. The tics seemed to go back to the previous base, but we were not certain whether this was just waning. DS kept improving for the rest of the year and had really not too many tics for quite a while. Next exacerbation (as I now think it was) erased all those gains....

 

I don't know if this helps you very much. My basic feeling is that the improvement gained was incremental, and at a high cost in time. If the cost was also in money,

I don't know if I would have stuck it out so long.

 

Lynn

[Chemar]

I have seen some reports on the TS/tics forum of the neurofeedback not having a good effect in some areas. I do think there is evidence suggesting it helps with ADHD, but it may not be beneficial if there are other comorbid conditions that may not respond positively to it.

[CynthiaB]

My teenaged son did 40+ sessions of neurofeedback. He has moderate cerebral palsy (right hemi) and we are just now investigating whether he has PANDAS. The neurofeedback did not affect his OCD at all, but did make him calmer and more organized, we felt. Less anxiety overall. That has continued, now a year and a half later. Worth it, but not a dramatic change.

[danddd]

i took my daughter for neuro-feedback and emdr before she was diagnosed with pandas. we went to try to help the ocd fears and anxiety.

i will say she was incredibly tired after, like the lady said she would be, but there was no real improvment so we stopped.

it was only 1 month after the strep maybe the symptoms were too strong.