Neurofeedback...comments, suggestions or thoughts

[CarolynN]

I have spent several hours reading information regarding Neurofeedback and Tourettes. I am getting real mixed information. I came across two people on the Internet who said it really helped their children but then I read some of the old postings on Latitudes to stay away from it.

 

I had spoke with an Environmental Physician, about a month ago, and explained to her Daniel's triggers which are all food chemical based. She said she thought the Neurofeedback would be real helpful for him. But on the other hand she is the one who does it so it is more income for her (I hate having to be skeptical).

 

Can anyone tell me if they have had any particular experience good or bad? The reason I ask is my parents told me they really want to help out Daniel in every way they can and are willing to help cover the costs. It is so expensive. It runs between $4000 to $5000 . I certainly do not want to put my parents out for no reason especially if it could make things worse for Daniel.

 

The other thing with Daniel, which I am so thankful for, is has literally no issues with ADD/ADHD. I know that the Neurofeedback seems to be primarily used for that issue and I certainly do not want to change a good thing I have with Daniel's ability to concentrate. I had read a posting from Claire stating the Neurofeedback caused her child to not be able to concentrate so well.

 

Daniel is doing real well on his supplements and as long as I keep his diet relatively light on chemical foods we are good to go. If we overdo the chemical foods, like once again happened over Christmas the tics come back for a bit. I just am trying to do whatever I can to give his body the best possibility at fighting his chemical intolerances.

 

Anyhow I am completely confused . I certainly want to do all the right things I can for my son.

 

Any thoughts???

 

Carolyn

[Chemar]

Hi Carolyn

I have no personal experience with neurofeedback (we did biofeedback which is *very* different)

however

based on Claire's report and that of others I have heard from, I personally would not go that route ever with my son for tics

 

it seems to help some with ADHD, but honestly, as you have said, this is not his problem, and as long as you are doing the right stuff with his diet and supps and things are going relatively well....why risk a possible negative reaction? IMHO

[ilovedogs]

Carolyn, Griffin's therapist suggested neurofeedback for us but it was more for anxiety and attention issues, but he did warn me that if it has positive effects that they aren't long lasting. In other words, he said you'll probably have to keep doing it to see any benefit from it and he said many times it doesn't work. He's getting certified for neurofeedback and he told me he can run it through insurance and include it in our office visit so we could try it for a nominal fee. He offered us no promises and pretty much said it's hit or miss. Quite frankly, I'm not sure it's worth trying unless you're absolutely desperate and have the money to shell out for it b/c there are no guarantees. If Daniel is doing well now, then I really think you might want to hold off on the neurofeedback and take the wait and see approach. You can always try it in a few years if you think it is necessary. Keep your options open. What does Dr. Proefrock say about neurofeedback? I never asked him about that at our visits.

Bonnie

[CSP]

Carolyn,

 

We looked into neuro. and Biofeedback. First place quoted about the same amout of money, but another Dr. said $100 a session she thought 10 sessions would give us a good idea if it was working. She said it real would be a waist of money if my son was not willing to believe in it, and work hard to help himself.

 

We felt our son would not do this because he does not seem to care that he tics, and heaven forbid if the session was at the same time as a baseball game.

 

I think she felt it really depended on the person really having had it up to their neck with their situation, willing to try it and making it work for them.

 

Funny she asked if our son was bothered with the screaming tic he had, my husbad told her no, but some days his mother and I are ready for the funny farm. She piped in and said, "OH I can help you and your wife."

[CarolynN]

Thank you all for you great responses. They really helped me process through the prospect of whether to do it at this point or not. At this point we will not pursue doing the neurofeedback but I may look into the regular biofeedback that has been so helpful to Chemar's son.

 

Happy New Year everyone (it is hard to believe it is 2009!!!)

 

Carolyn N.