dmc2267

We originally started Neuro to help my son with focusing/attention, he's one of those kids who appears to not be paying attention..doing several things at once..but then when you question him he would repeat what you said as if he was only attending to you, .he also would get distracted by the littlest thing and focus too much on detail rather than the "bigger picture". I don't know if it was an asperger's or adhd issue there is so much crossover.

I found it very difficult to find anyone who had negative results or research that said anything other than positive outcomes and "it just didn't have its time in the sun yet to be thought of as it should be". I read about people purchasing the machine and doing it at home on their own, even athletes and successful businessmen doing it for conditioning but I never read about any factors to consider such as application training or that in trying to achieve desired results it could cause permanent irrecoverable harm. I always read in order to be a lasting effect the child needs to have maintenance sessions, matter of fact, I was led to believe that if a session had undesirable results, it was just a matter of going to the office for an adjustment. I found out this was not the case when the adjustments weren't working and only making things worse and I asked for my son to be put back to his pre-Neuro state based on the QEGG. I've also spoke to parents who children have has great success with it but no one could tell me what was different about my child that he didn't. Like I said in my original post, I do not like to comment or judge on the paths parents chose for their child, when I read the post asking for information on Neuro, I kept thinking I would hate to see another family have the same results I did. My son never has a tic before and was doing extremely well academically, he is mainstreamed and his tics are a disruption to him, his teachers and classmates. On-going social understanding with age was still lagging but was coming along, especially with the preteen years but he was able to maintain and progress. His post-Neuro state is being blamed on him being a pre-teen, he is 12 1/2 now but had just turned 11 at the time of Neuro, I do not believe this is the case, I was there, I heard and saw the tics come with each Neuro session and change form and intensity as the Neuro was adjusted to try to fix the issue. This has had a horrible effect on him socially and mentally, he's become so withdrawn and unmotivated and no longer has the academic strengths he once had which gave him confidence and pride.. He plays ice hockey (team for developmentally disabled children) and has quit TaeKwonDo after 7 years, he's a black belt, and he has participated in numerous academic competitions, because of the vocal and motor tics slowing him down, these competitions are no longer a positive experience for him which makes matters worse. As a parent, I was at the stage where I felt all his years of hard work (therapies -ABA, social skills, etc.) was all coming together, he was getting the bigger picture and I was at the point I had no doubt he would have a successful future, the last component he needed to gain control of was his attention span which was why we chose to do the Neuro. I am now scared of what the future will hold for him.

Hi I haven't been on this forum in a few months..trying to catch up..I posted about Neurofeedback last July for attentional issues for a HAPPY mainstreamed Asperger's child, see Forum: Tourette Syndrome/Tics • Post Preview: #35551 trying to find answers to help my son. I normally do not like to comment on anyone's choice or therapies as all situations and children are different, I actually walked away from the pc after reading your statement "if anyone had information on Neurofeedback" but thinking about someone else going through what my son has it didn't feel right to just walk away. The state my son was left in after Neurofeedback, still two years later, is heartbreaking and no one or drug can help him I long for the days I have just have to tell him to "pay attention" or "focus". I thought I did quite a lot of research is did not find any negative from this so I save up and decide to do this. My son is now constantly ticking vocal and motor, he never had tics or stims prior, he's regresses both cognitively and socially and is no longer happy. I NOW know there are several variables tied to successful Neurofeedback, particularity technique and provider training of the therapy-which is what I am kind of thinking went wrong with my son's therapy. It's not something just anyone can do. I also wanted to pass this article I found, accidentally, "Negative Effects and the Need for Standards of Practice in Neurofeedback" http://www.aapb.org/tl_files/AAPB/files/bi...ive_effects.pdf , This article could have been writing with my son as the model.

What interested me in the article was "The researchers said they identified alterations in the frontal lobe of the Tourette's patients that might be responsible for the pathology of the syndrome." IF my son's tics were caused by the neurofeedback, C6,F6 protocol-wouldn't that be considered an "alteration". Curious if typical TS treatments are not working for my son because the orgin, or maybe this will help treat his tics. No, he did not have them prior and along with the tics his entire personality is different, could be from his now low self-esteen, reaction by classmates, etc, the "bigger picture" understand was there and we were building on it-it needed to be retaught, sensory issues (where you are in space) are now a problem, at times it seems like he was experiencing episodic memory loss were he remembered before. (This is a kids who had an amazing memory). My orginal interest in this was for his focusing. Can I absolutely say all of these things were caused by the Neuro-NO but thosse are some of the things that have changed since for whatever the reason. I did have his tested for PANDAS-negative.

ok from what I understand, the protocol used to calm anxiety involves working only one wave T4, I believe it's on the left above the ear but more towards the forehead I've read people having success wth this. The protocol used for my son involved two waves C6, F6 located at the top left/right sides. A knowledgeable source has told me she feels this protocol put too much electricity in my son's brain. She spend alot of time and effort trying to fix it. I hope my posting didn't cause any alarms, every child is different and will react differently. This is just my son's reaction.

Thank you, I did that, interesting..my son is addicted to his iphone and nintendo ds..but was a DS users for years never had any reaction. He has also been taking a pharmaceutical grade Salomin oil for that last 8 years-I've been reading some have had tics reactions, but they were able to immediately able to determine it was the Salomin oil causing the tics. I wonder if the cause of the tics is a combination of things triggered by the Neurofeedback. Thaank you for your reply.

I'm new here, would I be able to pull her post up?, would like to know if she was able to resolve it. Thank you for your resply. Diana

I believe the Neuro triggered the tics, from the very first session, things were not right, sparatic facial grimsing and his already load voice becoming even louder (speaking as if he was wearing headphones) , subsequent session were adjustments to "rewards" frequency to adjust the voice, with each adjustment the tics became worse starting with eye blinking, each adjustment produced another vocal, mouth or hand tic or all three together).It was strange first day after the session it would seem the adjustment worked, the next day back to tics. Finally I stop the adjustments during the last session the voice tics were increasing in volumn and frequence during the session as rewards adjusmtnets were being made. To me, it was clear the tics were being controlled by the adjustments, I hear it. I've read, and I am by no means an expert, I wasn't concerned with TS when I started out, the "calming" brainwave is T4, This particular protocol that was used on my son was C6, F6, this was recommended based on the brain mapping (qeeg). No I don't feel this helped for my son it has made his life very difficult and confusing. I have read where people beielve this helped them but that was not this protciol. I do know it effects everyone differently and there are no guarantee but I need to get some help for my son. Thanks for responding. Diana

I just read this, I am looking for information to help my Asperger's 12 year old son. In September 08, he did QEEG based Neurofeedback to work on attention, the protcol used worked with brain waves F6,C6, not T4 which has shown success in calming anxiety, helping TS patients with tics. His attention is his biggest obstacle as he continues to work on age appropriate social skills and higher level abstract thinking. He was happy, well liked and successful. My son developed both extreme vocal and motor tics in late October 2008 and doesn't show any signs of stopping. After each session, they changed there form but still existed. I've been to the experts who work with tics. He has been put on Resperidone twice which made the tics increase more. Life is ###### for him now, he is not the happy child everyone wanted to be around anymore and he has very little self-confidence left. Socially this has been a disaster for him. I just want to see him happy again. My question is, every doctor I've been to is treating the tics as if he has Tourettes, I am not convinced since I was present at each Neurofeedback session saw/heard the onset/changes of these tics with each session but since there is not any proof to Neurofeedback causing tics my words fall on deaf ears. Would it make a difference of the origin of the tics in how they are treated? My relating to your post is, I could be wrong, this was "an alteration in the frontal lobe". I'd appreciate any information,