Gifted Issues Discussion homepage Forums Twice Exceptional Neurofeedback for ADD - week 2 and hopeful

We decided to bite the financial bullet and try Neurofeedback, I don't want to jinx it but I am quite excited and cautiously optimistic about what I have seen so far! So much so, that we have decided to hold off on trying new meds(the first ADD meds worked well for 3 months and then stopped working completely while she was away at college).

I am going to describe it in case anyone else here is curious like I was for details:
Last summer when we first tried medication, the first thing my DD noticed was that while on the meds, she could quickly answer multiplication questions which she could never do before. After her first two sessions of NFT, she can do that again! We are doing 2 back-to-back sessions each visit with a 20 minute break in between since it's a long drive.

DD said she could feel her brain doing something active, sort of like a painless headache was the best she could describe it. On the drive home after sessions 1 & 2, I threw a bunch of multiplication questions at her and she rattled off the answers without hesitation. An hour later I threw out a double digit question out of the blue and she said "I guess it has worn off...no, wait..." and then she gave me the correct answer, after that she could again rattle off the answers quickly. She said when I threw the double digit question at her she felt her brain firing up again, the same feeling she had right after the session, and she was then able to once again pull the answers quickly. So it's like her brain is making new connections and strengthening them.

I am really intrigued, I got to watch a little bit of the first session and after completing a brain map, the therapist said he will be working out the executive function area (pre-frontal cortex?) first. She was hooked up to the computer and told to completely relax and with nothing but her mind make the yellow and blue bars that were gyrating up and down stay below the line at the middle of the screen, these bars were visual representations of her brainwaves at different frequencies, by learning to control them, she is teaching her brain to focus without frenzy. Once she got that down she moved onto cartoons for session 2: if she is focusing correctly, the cartoon is clear, when she stops, the cartoon goes dark. The cartoon is on a loop so in 1/2 hour she watched the same one 5 times, she said after 2 times it was boring but the therapist explained that this is also teaching her to be able stay focused even when something is not that interesting.

I asked a mom in the waiting room what she thought about it and she told me her son was nearing the end of his treatment (32 of 40 sessions) and it was like a miracle, he was a whole new kid. I didn't have the nerve to ask what he was in for, but I am going to assume ADHD. The kid was maybe 8-10 years old and he said he liked it, that he especially enjoyed the cartoons.

The therapist told me that from the brain map he could see too much activity during the relaxed state and they would work to remedy that. Of course I started worrying about him dumb-ing down her 142 VCI or PRI rather than speeding up the PSI and WMI to compensate for the 30-40 point gap. He said it's more about making more efficient nerve connections and learning to control when to transition from relaxed to heightened states and vice-versa.

He said one can usually expect to see:

-improved sleep after 10 sessions,
-a calming effect after 12 sessions,
-task completion after 20 sessions,
-overall much better functioning/self control after 30,
-normal functioning after 35 sessions.

I have read that for PDD-NOS or other spectrum issues it could take closer to 100 sessions and or could not be effective but he seemed to think this treatment also helps with those issues and he has been doing this for 16 years. He also uses this therapy on recovering addicts with great success, apparently it allows one to control OCD symptoms which tend to exacerbate addiction problems.

There is a Neurologist in Dallas that has been using this NFT to help people who suffer from seizures become seizure free.

It's quite exciting! If this works, I may go back to school and get trained/licensed to practice this so I can help people. Caution though: if you are considering NFT, make sure you go to someone who has had proper training, apparently anyone can buy the equipment and hang a shingle and I wouldn't want someone without serious experience and training to start messing with my neuro-connections!

DD will go back 3 times next week for 6 sessions which will bring her to 10, so theoretically, she could be sleeping soundly by next weekend!

Nik

SO interesting and exciting! Please keep us posted. I heard an interview with a local psychologist who has a clinic that sounds like something similar. He has the kids play video games and as long as they are focused the game remains challenging. If their focus wonders the games slow down. According to his website he also uses it for anxiety, ASD, SPD, LD's, etc. I have been curious but don't want to expose DD to anything unproven just to TRY to help her - know what I mean? I would love to read updates on how your DD is doing with it!

Update: DD finished her 10th session last Thursday and she has reported that she has noticed she is sleeping much better and she has had no nightmares recently..YAY! She is still able to quickly answer math facts and she seems to be calmer (not talking a mile a minute and staying on topic).


We were told that it will also work for her anxiety and PDD-NOS/ASD and if so, that would just be icing on the cake. In my research I found that while it may help with these issues ("possibly efficacious"), the studies thus far have all shown improvement for ADHD subjects with no negative side effects ("probably efficacious").

It appears that the only reason it is not yet covered by our health insurance is that none of the studies controlled for other treatment factors (i.e. the participants may have been going to counseling concurrently which may have impacted the degree of effectiveness). My DD has also started going to a Psychologist for CBT, I don't care if I never know which one helped the most as long as DD is seeing improvement!

Thanks for posting, Nik, this is really great to hear, especially since our DD seems to have symptoms of all of the above. If you get a chance, could you please post (or PM me) where you are or if you're comfortable the name of the practitioner? I would love to find something like this near us--but actually since we are on the East coast, and it seems like you're not, I guess it will still be awhile before we can try something like this.

I'm glad it's going well for your DD--continued good luck!

How did you find your practitioner Nik? I am very interested in neurofeedback for my ADHD DS11. Thanks for such a detailed description!

fwtxmom and dbat, I pm'd you

Thanks for posting this. I've seen ads for NFT in local parent/school magazines in our area and was curious to hear about it. Do you know how early can they start NFT? Do you know how they determine if NFT is warranted or not? How do they determine results or how many sessions are needed? Thanks.

I asked DD's therapist and he said the youngest he as seen had just turned 4 years old. He said at that age the treatment works much faster and less sessions are necessary due to how (plastic?) their brains are but for the same reason it may not have permanent results as it seems to on older patients. He said there have not been studies on the lasting effects for patients that young. I think they review the individual's case history and current difficulties to determine whether NFT could help. I think it is generally accepted that it helps with ADHD based on studies. Many believe it helps with other things too. I read that sports teams have been using it to gain a competitive edge by learning to control focus.

So far I can personally attest that it helps with sleep issues and quick recall of math facts...I will update if/when I can see anything else by way of significant change.

I am following this thread closely. Thank you, Nik for keeping us informed of your progress. It's fascinating; until you posted this, I had no idea this existed for ADD.

This seems like a pretty thorough review of the studies thus far on the efficacy of neurofeedback for ADHD/ADD:
http://www.hp-add.com/articles/neuromonstra.pdf
Given the consistent findings that subjects who had the neurofeedback therapy sustained the improved functioning as opposed to the non-neurofeedback groups who lost gains after a week of no medication...I can't believe this is not mainstream!

I believe it's because there are no long-term, wide studies that have shone any significant effect. There are lots of short-term ones, but nothing else, from what I've read.

Actually, this has been around for quite some time (it started in the 60's with experiments on cats!!!), in the previous link, one of the referenced studies went back 3 years later and found that all of the improvements had been sustained. That was in 2005. This site: http://www.aboutneurofeedback.com/ references the same researchers:

"Dr. Joel Lubar at the University of Tennessee and a few others have done long-term follow-up on clients. Dr. Lubar says they’ve followed ADD clients who’ve sustained their improvements from neurofeedback for 10-20 years."

Sorry, I wasn't clear. I meant published, peer-reviewed studies. There have been cases of great, long-term gains from neurofeedback. But the only currently accepted long-term treatment plan for ADHD is medication.

I am all for trying things like Neurofeedback, btw, so please don't confuse me! We are going to be trying CBT with DS8 here in a couple of weeks.

Considerable published, peer-reviewed studies exist, and APA (Psychologists) now accepts Neurofeedback as an efficacious treatment, according to a psychologist friend. I am a therapist working in a large public mental health clinic where we have been using this for over 7 years. Most kids have greatly reduced or eliminated meds if they were on them. Besides ADHD, we've had great success with a number of learning disabilities and mood/anxiety disorders. The current research on autism is showing dramatic improvements. Once I saw the power of this intervention -- with no negative effects in my experience -- I knew this had permanently changed my practice. You might enjoy reading Healing Young Brains.

Donna, would you please point us to some of the peer-reviewed studies, preferably ones with large samples? And is LMFT a professional designation?

DeeDee

A quick update:

DD has now completed 20 sessions and so far so good, the sleep improvements have stuck, DD continues to have control over when she goes to sleep (which is huge and in itself justifies the cost of the therapy to me).

After 10 sessions working on the front "executive functions" area (which resulted in better sleep?!), the therapist moved the monitors to the top of the head and started working on anxiety. DD said she got to play pac man where the game sped up if she was focusing correctly, and slowed or stopped if she was not.

The therapist said she is progressing well but she has not noticed any new effects good or bad. As DD pointed out, there is no baseline right now to tell if her "task completion" is improving since she is not in school or working at present. I will say that she seems happier and generally more pleasant to be around and easier to converse with (without the conversation jumping all over the place). She also seems more mature and far less irritable. I don't know whether this is a result of the NFT, CBT, proper sleep, simple aging or a combo of all of these things but it's all good!

I am curious why there haven't been any long term peer reviewed studies. I understand the treatment is not proprietary and as such there is no financial incentive in the USA, but I would think in countries with socialized medicine, it would be worth it for the potential savings on the costs of medication.

WARNING: In my search for studies, I have recently read some pretty scary stuff on other forums about individual cases of NFT gone wrong and as such, I would strongly caution against going to anyone that does not have a long verifiable track record of successfully using this type of treatment.

Also, it seems there are 2 types of treatment that may be called the same thing. The treatment my DD is receiving only involves feedback (observing her own brainwaves on the PC), I would run from any treatment that involved the actual introduction of stimulus to the brain.

Nik

Nik...
So glad to hear that the improvements are making life better all around.
Yippee!
Grinity

So glad to hear it's going well! We have 2 more weeks before CBT begins...

Hi,

I'm new to this forum, but thought I would chime in with our experience with NF. My daughter with ASD/Anxiety/OCD/Sensory issues and motor delays went twice a week for NF; we had just over 60 sessions, combined with interactive metronome and CBT.(I pretty much lived in that office for two years). We did see some improvement with attention(her problems with attention and organization stem from the information processing problems of AS, not ADD) and a HUGE improvement in anxiety. She still has an anxiety disorder, but she is able to "function" with a very mild medication(Buspar vs SSRIs)combined with daily yoga. If we had not done NF, I don't think we would have been able to avoid the SSRIs. We saw little improvement in social or motor skills, or sensory issues. I wouldn't hesitate to strongly recommend NF for ADD/ADHD or anxiety disorders, but would caution about the time and expense vs. payoff for AS. I hope all continues to go well for your child, and agree this is very exciting science. I hope others are encouraged to seek it out.

Heather

Nik - I must give you a huge thank you for posting this. Yesterday I met with a 2e specialist and she said neurofeedback would make a world of difference for our DS.

Yesterday Dr. Lovecky confirmed that my eg/pg DS6 has ADHD; signs of PDD; CAPD; some visual processing issues still despite 2.5 yrs of vt; sensory processing deficits - despite 5 yrs of ot (can you say Oh Vey!). She asked me if I had considered medication. I then briefly asked about neurofeedback based on this discussion here. Well, any talk of medication was dropped like a hot potato and she only concentrated on the neurofeedback and what a difference it would make.

Today I picked up the book, Misdiagnosis and Dual Diagnoses of Gifted Children and Adults, again as well as the Healing Young Brains book. What struck me is that the Misdiagnosis and Dual Diagnosis book doesn't mention neurofeedback yet it's published in 2005 and Dr. Lovecky recommended it to us.

Now Dr. Lovecky is an expert on 2e kids - wrote the book Different Minds. I don't have the book in front of me, but I don't think she would recommend neurofeedback to us and not medication unless she was fairly certain of the outcome and results.

Hi CDfox
Sounds like you had a satisfying experience...that is good.

I went back and reread your post and can see that I totally misread and misunderstood. I deleated what I wrote because I was so far off base. Thanks for the info on Neurofeedback. I don't know anything about it but hope and pray that it will help many families and that it will be well studied.

I have no negative judgement of you or neurofeedback. I can see that my response could be taken as a negative judgement and I appologize. That was certianly not my intention.

Love and more love
Grinity

Grinity - you have done so much for this board that I wanted to respond to your points. I have personally benefitted from your guidance at times so I really do appreciate what you say and do on this board. I really hope we can all learn from this discussion because neurofeedback is not on the radar much. After meeting Dr. Lovecky, I'm scratching my head as to why - except to say it's probably expensive and time-consuming.

Before we talked about the ADHD diagnosis and treatment, Dr. Lovecky had mentioned the various checklists that indicated our DS had ADHD. Here, I think she was trying to get us to accept that our son actually had ADHD - which wasn't an issue for us because everyone has been saying our son had attentional issues since he was born. Of course, my son got a diagnosis for ADHD last summer based on his inconsistent and scattered scores on the WPPSI.

After getting us to admit that our son had attentional issues and an ADHD diagnosis, Dr. Lovecky then broached the medication issue by asking us if we had considered medication. I replied, "what about neurofeedback?" I said that when I had an IEP meeting with the public school, they wondered why we didn't just put our son on medication. But our pediatrician had advised me to get further testing before accepting an ADHD diagnosis and medicating him. Pediatrician wondered how far we would go with the testing and if we get a brain scan or EEG.

Dr. Lovecky said neurofeedback would re-wire the brain permanently as opposed to a temporary fix. She said it would get to the heart of a lot of his problems with our son and eliminate the need for medication completely. She seemed to think the neurofeedback would resolve the ADHD, the PDD symptoms, and the issues with the visual and auditory processing systems. She said that if we did the neurofeedback and worked on the CAPD, then in a couple of years time we would probably get the test scores that are closer to our son's ability.

To be honest (and I don't mean to be disrespectful here), I don't feel the need for clarification or an outline on the risks, treatments, etc. of neurofeedback vs. medication. We didn't get so caught up in talking about neurofeedback that I forgot to ask her opinion on medication. I didn't need it. I heard that neurofeedback re-wires the brain and that was enough for me. I had already seen results with my son and vision therapy, which basically involved re-wiring the brain with ambient glasses and daily vision exercises. So it wasn't a leap to say "what about neurofeedback?"

I've been reading as much as possible on giftedness, ADHD, LDs, VSL, etc. as possible. Dr. Linda Silverman mentions neurofeedback in our book, Upside-Down Brilliance, as an alternative home remedy for ADHD-like symptoms to get off medication completely. She says kids with ADHD spend too much time in theta states, where they are spacey, and they have a difficult time sustaining beta states, where they are focused.

Medicating children with ADHD unfortunately does not go to the root of the problem or solve the cluster of problems that usually come with ADHD. My son has been in two gifted schools - both of them were supposed to be aimed at and designed for gifted kids with ADHD. Teachers at both schools told me that if the ADHD kids didn't take their meds in the am, they knew about it immediately and the day was a mess and nothing got done. Being a former teacher myself, I've seen it.

I'm not opposed to medicating a child, but with my son it wouldn't solve the cluster problems that he has or address the wiring of the brain. Neurofeedback would. My son was born with special needs, some severe - including a type of severe brain condition and severe sensory processing issues. He's now 6.5 yrs old, but only finished vision therapy 6 months ago and had over 5 years of therapy (a combination of ot/pt/speech/feeding/vision). Years in these therapies have helped but they haven't solve the wiring of the central nervous system and brain dysregulation that went haywire due to uterine constraints and being born with torticollis (CMT muscle on the neck).

I know neurofeedback is controversial within ADHD but with very high success rates - vision therapy is too...and the list goes on and on. It's a bit out of the box and the idea of re-wiring a child's brain or having surgery is scary to most people. Medication is seen as the answer for ADHD, but it is not the sole answer or the most effective one in treating it.

Neurofeedback is a scientifically proven form of brainwave feedback that trains the child's brain to overcome slow brainwave activity and increase and maintain its speed permanently. Neurofeedback is a non-invasive, drug-free, effective approach to ADHD.

Most significantly, 80 percent of the time, neurofeedback is effective, and there are none of the side effects associated with the drugs commonly used for ADHD.

I don't know if Dr. Lovecky regularly recommends neurofeedback or not for ADHD. My guess is that Dr. Lovecky saw my question "what about neurofeedback" as a kind of litmus test for me and my husband to see whether you would consider alternatives for treating ADHD. I could be wrong though. We had a lot of ground to cover so I don't think she wanted to spend a lot of time discussing ADHD or the various treatments. The fact that I inquired about neurofeedback seemed to be a relief for her. Remember, though, my son has already had some controversial treatments and therapies and seen many specialists.

Grinity - I really like 4) discussing neurofeedback is fun, exciting, and unusual so everyone got distracted. That's good. I wish I could spend a week with Dr. Lovecky or Dr. Silverman picking their brains.

CDfox, how do you plan to find a trustworthy practitioner? For me, that would be a paramount concern...

DeeDee

bump

Welcome! My DD was dx’d with ADHD-I, PDD-NOS and then unofficially with Anxiety. Her Neurotherapist has stated (after getting to know DD for a month now) that he believes the PDD-NOS dx may have been incorrect and my DD just has severe anxiety. He believes that this extreme anxiety caused some of the past problematic behaviors; he is going to do some testing and possibly remove her PDD-NOS diagnosis (!) I am so excited to hear that NF made a huge difference for your DD’s anxiety (the therapist told me it would for my DD too but my research did not conclusively back that up). How old is your DD and how many sessions did it take before you started seeing a marked improvement in anxiety?


You’re welcome! I hope you are able to find an experienced practitioner and I hope it works wonders for your DS! That is very interesting about Dr Lovecky not mentioning it but quickly raving about it once you brought it up. I must say, if the meds hadn’t stopped working for my DD we probably never would have discovered Neurofeedback (blessing in disguise?)


I vote for this reason, maybe there is some sort of code/liability in the profession?


Possibly since insurance doesn’t cover it, but I am paying $66.00 a session with a seasoned professional; that is only $26.00 more than my co-pay would have been if it was covered by insurance. So not really cost prohibitive and if it means no meds, it could become a savings pretty quickly.


Those are some really big promises, I hope she’s right. Did she recommend a seasoned professional practitioner for you? My NFT said it works well for about 80% of his patients he typically sees improvements in X after so many sessions. He said most ADHD patients need to reduce or eliminate meds after 20 sessions. He never promised anything by way of results, so I was ecstatic about the immediate improvement in mental math and sleep.


The whole brain rewiring is no different than learning yoga or breathing techniques, it’s not like a lobotomy, its just teaching your brain how to regulate itself and easily switch from day dreamy to alert states as needed like most people do without even thinking about it.


I WOULD STRONGLY RECOMMEND AGAINST USING NEUROFEEDBACK AS A “HOME REMEDY”!!!!!

NFT works by rewarding the brain for “normal” or “correct activity, someone who didn’t know what they were doing could accidentally set it up to reward the brain for dysfunctional activity and really do some serious damage!!!

Please do thorough research on whomever you chose to provide NFT, get references from previous clients, Google them and make sure they are legit, make sure they have had real training and a verifiable lengthy track record. NFT has so much potential to do permanent good, but there is also so much potential for inexperienced practitioners to buy a machine, hang a shingle and waste your time and money or worse, screw up your child.

Grinity - no problem/worries. I also hope NFT becomes better known and studied. The book, Healing Young Brains, helps a lot. It's got one of the best discussions of ADHD and how it affects the brain that I've come across.

Nik - thanks for the info, especially on the $ per session. That really helps. Yes, I know about researching for an experienced NFT provider. This is where having a library degree comes in handy! I've also been down this road finding various specialists (ie. torticollis specialist - try finding one) and therapists (vision therapy - you've got to find an experienced one or otherwise you're spinning your wheels and wasting your $).

Yes, I think finding a seasoned NFT therapist is key. I'm in the middle of researching who to choose - made much easier once I got my Internet service restored after electrical storm!

Healing Young Brains - says young clients usually need about 20-40 sessions; some up to 80-100 depending on the severity of the problem. They also strongly recommend NFT in conjunction with other therapies - vision therapy, sound therapy, etc. if needed. It's not a magic cure, but it seems to come closer to one.

Dr. Lovecky - was quite insistent that Neurofeedback would probably work for our DS. This gave me hope. I really don't think she mentions it unless the parent brings it up. She said that she knew NFT people in RI, but not in our area. I'm North of Boston so I'm trying to find someone closer.

Dr. Silverman - agree about the home remedy bit. I don't know why she listed "home remedies for ADHD-like symptoms." It's deceiving and inaccurate. She lumped dietary interventions with neurofeedback and while parents may be able to restrict gluten or casein from a child's diet, they are unable to do NFT.

NFT - in my opinion, should be the route to treat ADHD, anxiety, autism, sleep, etc. BEFORE any medication. If a child doesn't respond to NFT (and there's 20% or so who do not), then prescribe medication. BUT for the 75-80% of children where NFT could greatly reduce or completely eliminate ADHD, anxiety, sleep disorders, and possibly autism, it seems pretty silly to me not to do it (unless you're blissfully, innocently unaware of it).

Any time you have a drug-free, non-invasive treatment - ot, pt, speech, feeding, vt - that could treat and help a child should be considered FIRST and before any medication.

I'm sorry, but this is Big Pharma trying to call the shots and control us. There's no patent or potential windfall of profits with NFT like some drugs.

The book, Healing Young Brains, has a chapter devoted to finding an experienced practitioner in your local area.

EEG Spectrum International - www.eegspectrum.com
EEG Institute - www.eeginfo.com/institute
Brian Othmer Foundation - http://brianothmerfoundation.org
International Society of NFT and Research - www.isnr.org
Association for Applied Psychophysiology and Biofeedback - www.aapb.org
Biofeedback Certification Institute of America - www.bcia.org

The more disorders a treatment claims to cure, the more skeptical I become. Although some people with autism also have impaired attention, ADHD is at its base very different from autism. Likewise sleep disorders have lots of different causes.

I'm very interested to know more, and I'm grateful to you and Nik for providing some details and links.

At the same time, the claim to cure so many very distinct problems with one tool smells of pseudoscience to me. Treatments that make such big claims can indeed be as much or more of a hoax as anything "big pharma" produces.

DeeDee

NFT doesn't claim to cure autism or so many very distinct problems. It's a drug-free, non-invasive, natural, self-regulating approach to help restore the brain's ability to function.

ADHD and autism are different, but many people with ADHD and autism have other problems, such as sleep and anxiety, that stem from the brain's ability to regulate itself. With very young children (i.e. under 3), we know that early intervention and therapy can make a world of difference - even with some autistic kids. At some point, perhaps when a child is 7/8 yrs old, NFT might be something to consider and an option. I don't know, but I think a lot of parents with kids who are autistic are willing to explore and find out if there are alternative treatments which may help.

NFT is not a magic cure, but it can make a huge difference and possibly greatly reduce or eliminate some disorders. Does it work for everyone? No. But it should still be considered with other forms of alternative treatments instead of accepting autism, ADHD, LDs, etc. to not be improved for the duration of a person's life. I'm sure with autism, in particular, that children with PDD have a better chance of success with NFT than someone with severe autism, which may receive no benefit or results. There is a wide range with the autism spectrum, so you'd really have to look into NFT.

I understand your skepticism with NFT. I was skeptical of vision therapy. That's seen as pseudoscience and bogus by many doctors and ophthalmologists. And yet, I can say that it can make a difference and help. Many professional athletes, executives, and others are using vision therapy to give them an edge in their endeavors - I've heard that a similar thing is occurring with NFT. It doesn't seem to be getting a lot of attention in the media; drugs are constantly being advertised to us - and many of them which are rather gender-specific shall we say.

I haven't read it, but there is a book - Autism: Effective Biomedical Treatments by Jon Pangborn and Sidney Baker - that might help. Healing Young Brains has one chapter on autism and the authors admit that "implementing several treatment modalities usually produces the best results, especially neurofeedback. It is our opinion that, overall, neurofeedback is the most effective treatment in restoring a child to a level of well-being that is meaningful." You don't have to agree with these authors though.

NFT is not the same as using medication to alter the chemistry in the brain. It's a different approach. Parents have to be invested in it. Otherwise, it's not going to be effective.

Yes, early intervention is considered important for almost any challenge, but the interventions chosen are not the same ones. You use different tools to intervene for kids with different challenges. Behavioral therapies are notoriously ineffective on kids younger than 8 with ADHD (so far as I know), yet they are great for kids with ASDs.


Yes, therein lies my skepticism. People with autism have been subjected to alternative therapies that have *literally killed them.* I am not exaggerating. I am talking about enemas with bleach, chemical treatments of their blood, a variety of truly insane things tried on children whose parents consented out of desperation to try something to help their kids. Desperate parents will "explore" and try things and lay out every bit of their money for a treatment whether there is a scientific basis for it or or not. (There is. by the way, no scientifically proven biomedical treatment for autism at this time, though medications are sometimes used off-label to treat symptoms such as anxiety.)

NFT claims there is no downside to what they are doing; I don't know enough about it to evaluate the truth of that claim. But some of the things that are tried to help people with disabilities definitely do have a downside, and science can protect people by evaluating those claims carefully, testing whether they are always true or in what conditions or popuations they are true.

All these alternative therapies, like medicines, are also money-making industries-- let the buyer beware.


If it's a matter of belief, then it's a religion. If it works on someone else, it should work on them regardless of what's in my head about it.

CD, I'm glad to be in conversation with you, but I must for now remain a skeptic. I hope you are not offended by that.
DeeDee

Update:
DD has now completed 30 sessions, we are noticing lots of little positive things, but generally an all around more happy and relaxed nature. (DH commented last week "she seems much happier and like she lost the chip on her shoulder"). Today we went to an interview for a program she thought she might be interested in, (a situation that would normally cause her major anxiety). I noticed that she looked the guy in the eye and extended her hand first for a handshake upon leaving (this never ever would have happened before). I asked her how she felt and she said that while she was aware that she was in unfamiliar territory/uncomfortable situation, she noticed a distinct lack of physical symptoms or discomfort (fight or flight response that she typically would have felt). So, so far: sleep, quick math fact recall, anxiety and overall "zen" seem to have improved significantly. YAY :-)

Oh, and the CBT went out the window :-(. The therapist wasn't even doing that with DD, when I reminded the therapist that that is what I hired her for she said "well, I guess we could try working on breathing exercises" Sigh....


I think being invested and believing are 2 different things here. If you don't invest the time to go at least twice a week and continue for at least 35 sessions, you may not see permanent and profound change.

DeeDee, I shared your concerns when the list of issues that NFT addresses became so long and diverse, but I think a lot of those things have some overlap. I.e. a sleep disorder may be the result of anxiety. Anxiety is a big part of autism, if the anxiety is removed or significantly lessened by NFT, it seems natural that you would say NFT helped with both sleep disorders and autism.

cdfox, thanks for posting the links! I hope you will share your experience with NFT here for others too!

Nik, I'm glad your DD is seeing such progress. How is the writing coming?

CD, I hope you'll share your child's progress too. It would be good to hear more about experiences.

DeeDee

I am not an expert on neurofeedback, we looked at it for our eldest and we are still thinking about it but both the cost and more importantly the time commitment are a problem for us at the moment.

DeeDee while I agree that there are all sorts of snake oil treatments out there and that it is wise to be cautious of a new treatment that claims to cure "everything". I think we also need to keep in mind that we are quite willing to accept that psychologists diagnose and treat all manner of psychological conditions, we don't scorn physiotherapists for treating both necks AND knees. All of the the conditions that I have heard NFP suggested for are neurological dysfunctions, and the idea is to teach your own brain how self regulate better, it makes sense to me that there are a variety of different ways that could be applied and be useful.

From what I understand (which is probably horribly simplistic), the idea is to first asses if there are any problem areas via a full qEEG, then treat by visually showing the client the output of the problematic part of their brain and offer computer based "reward" when they manage to change that pattern to a more normal one. So one person may be training one part of their brain (say ADHD related) while the person in the next room may be targeting something else entirely (say anxiety related).

That said choosing a skilful professional seems to be of paramount importance to me. There were some things that annoyed us about the neuropsych we saw who offered neurofeedback, and that may be part of why we have not proceeded yet. One thing that I DID like is that he was very up to date on a wide range of current research on NFP and was very open about his own success rates. He was for example quite willing to tell us that while there was someone in the US publishing great success rates for treating dyslexia, but that he had not been able to replicate those success rates himself, and would not treat our DDs dyslexia with NFP at that point in time...

I was also quite fascinated by the neuropsych's explanation that one's basic qEEG pattern is "born" and doesn't change. That they can tell who is prone to post traumatic stress BEFORE the stressor hits, likewise depression, ADHD, etc. I didn't fully grasp how that pattern worsens when "active" or is improved by treatment. But he was quite clear that a person's pattern is always there to see, and also that qEEG is quite reliable for assessing which type of ADHD medication is most likely to work based on the brainwave pattern (ie stimulant or one of the other forms of treatment). I know that the paediatrian my friend uses for her son uses qEEG to help assess whether medication is likely to be of benefit and which to use (he does this after diagnosis). Our neuropsyc, of course, wanted our DD to do neurofeedback and not take medication but was quite clear that if we were to try medication it should be stimulants.

DeeDee - healthy skepticism is good and beneficial to you as a parent. No offense to me. Agree with MumOfThree. There are a lot of snake oil treatments and a lot of medical professionals who give less than stellar advice or are down right medically negligent. Been there, done that. That's why it's imperative to get a second, third, or even fourth opinion at times and question the medical profession.

I speak as a parent who had a child born with deformed head and neck - yet is eg/pg. So I went through numerous specialists, therapies and alternative treatments for my DS. IF I had always followed the research and more conventional recommendations for my DS, then he would never might still have a deformed head and neck or not showing any signs of eg/pg.

Not every alternative treatment will work for every child or every diagnosis.

DeeDee - I agree that some therapies can harm a child. Yes, that's true. If a child with muscular torticollis starts physical therapy without knowing the cause of the deformed neck or some tests, such as neck x-rays, then pt may cause further damage.

I fully realize that autism is a different set of issues. I've got an older sister and father on the autism spectrum. My sister is a lower functioning Asperger's. She had some treatment from 3-6 yrs of age, but then got nothing. She's now 46 so things were quite different 30-40 years ago. If she had ABA or some other kind of further intervention years ago, would it have made a bigger difference in her life? I can't say, but I'd like to think it would. I don't know if NFT would make a difference, but I like to think it would have or would today. I'd give my eye tooth for a better social/emotional functioning sister, though I know there is no magic cure to treating autism.

I'm not an expert on NFT, but from what I've read and researched I think it offers a lot of parents hope and a possible alternative treatment for children. Whether it would greatly reduce or eliminate a child's disorder/s is another matter. It may; it may not.

I'll keep people posted once we find someone and start treatment.

Nik - please keep us posted. I'm finding your results very encouraging.

Update:
For a couple weeks dd said she really didn’t notice any big changes beyond the improved sleep, this was while the therapist was working on the “racing thoughts and general anxiety” but she kept going to her sessions. I asked the therapist if he thought it would be a good time to go ahead and try different ADD meds since we weren’t seeing any more results. He suggested waiting until we had finished 35 sessions to make the decision about trying meds.

She has now had 35 sessions and WOWIE WOW WOW!!! Here are some of the things she has /we have noticed:

She noticed she is suddenly no longer afraid to sing along to the radio in the car (fear of other people seeing her in traffic and laughing at her previously prevented her from enjoying this activity).

She said her internal monologue is much more pleasant (?)

She can think more clearly and hold on to thoughts much longer.

She just knows the correct answers to things off the top of her head whereas before she would have to work through and really think about how to arrive at the correct answer i.e. quick math, situational analysis etc.

She said she is having spontaneous thoughts like “if I do my laundry now, I won’t have to get up early tomorrow to do it”. She said this one had her a bit concerned because she has always despised people who plan ahead and are organized and this was such a foreign type of thought for her coming from her own brain that she started to think she might have been brainwashed. But then she realized this really isn’t such a terrible way to be and she was quite pleased about it.

I have noticed DD consciously catching herself and redirecting her energy in situations where she would previously have shut down or had an outburst of anger. For example, I was driving and needed to make a call, I picked up my cell at a red light and she started to huff, previously she would have just gone into a silent angry rigid mode and expected me to know what was wrong, but she instead took a breath and calmly vocalized that it made her uncomfortable when I used the phone while driving. (This was a real win-win because I was able to get her to enable my blue tooth which I hadn’t gotten around to figuring out how to do yet)

I have noticed that she is now willing to put her appointments into the calendar on her phone.

I have also noticed a bounce in her step and a lot more smiling and laughing, voluntarily hanging out and chatting with us, more willingness to hug/be hugged and just an all around much happier nature.

This is all snowballing in very positive way because all of these little changes are so noticeable, there are constant opportunities to praise and reinforce the positive behaviors and we don’t even have to think about the fact that we are doing this, it’s just happening because it is so awesome to see these changes, we can’t help but to comment on them.

DD has only a few more sessions to go. I mentioned to her therapist that I had read that for some people it could take 60 to 100 sessions to see complete results and he said no, with most people 40 is enough unless the therapist is just unskilled.



I don’t really know about the writing because she hasn’t had any required writing over the summer. I don’t want to treat her like a guinea-pig by demanding that she produce something just to see if she can…But I have suggested that she try out her new “super powers” and see what else besides math is easier now. That said, (and I don’t want to jinx anything here) she actually bought herself a notebook last week and she was happily showing me how she had a little bag packed with the new notebook, a pen and a book to read. She explained that she had some ideas for songs and poems and wanted to write them down; she also said that by carrying this bag with her, she would no longer fear arriving at appointments early because she would have something to do in the waiting room. This in turn would help her to not be late anymore. I asked “so you’re planning ahead?” She sheepishly grinned and said “well, yeah, maybe”. (She has always vehemently rebuked any attempts on our part to teach her organization or planning skills, so this is huge).


This is my understanding too. For my DD, the first 10 sessions worked on the part of the brain that regulates EFs and sleep (front of the head), then she worked on racing thoughts/general anxiety for about 10 sessions (top of the head), then social anxiety (right side of the head I think).

Yes, this can’t be emphasized enough!


Wow, how difficult for you and how brave. Your DS is very lucky that you are not just accepting traditional recommendations. My brother was diagnosed with severe scoliosis as a child and the doctors wanted to put him in a painful back brace for years. My mom researched it and chose to instead work with a chiropractor, in the 70’s, this was unheard of. My mom was frowned upon for her choice, but my brother did the exercises, took the supplements and had the adjustments, he turned out fine and was able to avoid the brace entirely.


From what I understand, it would absolutely make a difference even at her age (as long as she isn’t in the 20% that it doesn’t work for).


I look forward to hearing about your experience; I sincerely hope you have great results like we have had.

Thanks so much for the update, Nik! I'm so glad for you both that things are going so well, and I hope that the progress continues. I'm really thinking of looking into this for DD but don't know anyone in the area (Southeast), so if anyone has, I would love a recommendation.
Best wishes,
Dbat

Thanks so much Nik. This is most encouraging. We met with the NFT on Saturday and my head is still swimming from the sheer volume of stuff she talked about and showed me. I'll start a new thread about the diet because it was and has been a bombshell.

NIK,

It appears we are in the same area based on one of your posts. Do you mind sharing who you saw for treatment? Please feel free to PM me. I'm intrigued by NF and would like to talk to a provider.

I have a friend that also had success with her child, but they live up North. She said her son's symptoms were still there, but were less intense and more easily managed with behavior interventions. She also saw improved sleep. After session 9, she started noticing that his sheets were in place on his bed in the morning vs a tangled mess on the floor.

I appreciate your help!

I, too, would be interested in the name of your practitioner, so if you would PM me as well, I'd appreciate it. I'd like to learn more about this. I'm in North Texas as well.

Thanks!

TX Mom I would agree with that assessment, the symptoms are still there but SOOOOOO REDUCED. Petunia, I don't mind sharing the practitioner info here, I think he earned a plug ;-). We went to:

Neurotherapy Associates in Denton - Richard Davis
4232 N. I-35E
Denton, Tx. 76207
940-243-7586 wk
940-243-7524 fax
http://www.neurotherapyassociatestx.com/

I hope it works out for you both!

Another update from us too - DS is now on neurofeedback #2. DS has had over 20 sessions of neurofeedback with #1 and just started the next block of 20 sessions with #2 last week. This one actually takes our insurance and we only have to make a very small co-payment ($20) per visit!!!! Still, I don't regret seeing #1; I just wish they took our insurance and weren't so expensive.

So I say with neurofeedback it really depends who you see, what results you're seeking, what's going on with the child, and other variables. Research and read about it because neurofeedback is different than most other therapies or what most people are familiar with. I'd also suggest to look into the diet/nutrition regardless either on your own or with a specialist because it can play a key role with the brain and behaviors.

One of the advantages to neurofeedback (as opposed to other therapies) is that it is objective and evidence-based. You can get a reading of the child's actual brain activity or a brain map. This can pinpoint what specifically is going on. Either a child has excessive delta brain waves, for instance like my DS, or they don't, which is something you're unable to do solely with a clinical observation.

FYI - I've taken my DS to two neurofeedbacks and neither one had us do a full qEEG. Yesterday, I asked neurofeedback #2 about the qEEG and he said that they primarily use it if a child has been in a car accident or had a concussion/blow to the head or certain situations.

Any updates from those of you using NFT? My physical therapist brought it up the other day as a suggestion for my son (without my asking - we were talking about our kids and one of his boys did NFT).

We are considering it, especially since we have a personal recommendation of someone close to us.

bump

bump!

Next week is the last week of NFT #2 for DS. He'll then have had 16 sessions with NFT #1; 20 sessions with NFT #2. At some point, we may have to return to NFT #2 for another 20 sessions in the future since we only pay a small co-pay, but nothing definite at this point.

The results - while perhaps not as dramatic as they were or felt with VT - have been impressive. When DS first started NFT, he could barely sit still for a minute or two in NFT #1's office. Today, he can sit still in the same office for 20+ minutes.

Attention span has improved quite dramatically. Meltdowns and blowups have subsided, though unfortunately not completely disappeared to be honest like I would like them to have! Impulsivity has improved. Self-regulation has improved considerably, though I also partially attribute this to the diet and the elimination of certain foods which trigger DS. In DS's case, diet is definitely part of the environment; when we changed the environment, we helped to change DS.

Unfortunately, I haven't seen a whole heap of improvement with sleep and getting DS to sleep or bedwetting - bugbears to me and DH. DS may need more NFT for this to improve, or this may be part of him that's staying with him. Difficult to say. If anything, DS's pg has come out more and he's become more of a voracious reader at night!!! URGH....I want him to go to bed and sleep!

DS started NFT in Aug and we noticed a huge break/tipping point around Thanksgiving. Up until Thanksgiving, we had a lot of oppositional behavior and also resistance to homeschooling. Since then, less of both, thank goodness. We also had a spate of developments around Thanksgiving and since then. It's very possible that NFT played a large role since DS's attention span had improved so much.

Did I mention that PGness has come out more? That's enough for me to be a fan of NFT. It's not a magic cure or pill and it does take some serious effort if you're going to completely switch the diet like we did, but it's hard to say it doesn't work at this point or worth its weight in gold.

Thanks for the update, cdfox. You mentioned that you had a lot of oppositional behavior up until Thanksgiving. Was that normal or do you think the NFT made it flare up?

I can't remember for sure, but I'm thinking your DS is about 7? Mine wet the bed until he was 7 1/2 and then, one morning, he was dry and has stayed that way (rare accidents). I have no idea what happened with that. The doctor said that bedwetting can actually be hereditary, mostly passed from father to son, which I thought was interesting.

I'm glad you found something that has worked for your DS. Sounds like things are looking up.

Well, the situation with my son was complicated for a bunch of reasons. First, we had to drop NFT #1 after 16 sessions rather abruptly since we were paying out-of pocket. So we had a two-week period between NFT #1 and NFT #2 (who took insurance) where DS was like an addict or bipolar and completely unreasonable/irrational. DS had just started to get use to NFT (and diet which had been completely flipped) and to end it so abruptly with NFT #1 caused blowups and major opposition.

Moral of the story here is to try to find a NFT who takes your insurance so you don't go broke and can provide x sessions that your child needs.

Second, with NFT, you're basically re-wiring the brain - from the core, from side to side, top to bottom, etc. Without NFT, a child's brain is somewhat like a record player getting stuck in a grove (or at least that's how it was explained to me by NFT #1). So it's not that a child willfully wants to be oppositional or irrational, but that they may have trouble getting out of that grove without NFT. Think Explosive Child book here.

Third, I'd say that it took until about Thanksgiving for my son to get his brain comfortable with NFT and for it to stick. When we initially saw NFT #2, they gave me a brain map that showed DS's excessive delta waves (associated with a brain injury rather than ADHD) and told me that I was quite right to continue with NFT. NFT #2 said that DS probably started to accept the NFT with NFT #1 but that it didn't stick entirely as evident from the excessive delta brain waves.

Fourth, in hindsight, I can say some of the oppositional behavior was, unfortunately, age-related (still is), but some of it was due to my son's brain adjusting to NFT and a new state of mind/reality where the left/right hemispheres of the brain were no longer at war so to speak. We had a similar situation with VT before DS's brain accepted the new reality/worldview.

Bedwetting - yes, DS is 7 and yes I heard it was hereditary too from my son's pediatrician in Nov. Of course, when I mentioned this to my mother, she then informs me that her younger brother was a bedwetter until 10 yrs or something. I kind of wish my mother told me this gem of information before - along with some of the eg gems about him and her sister - but what can you say?

Things are looking up? Well, I hope so. After 7 years of various specialists, therapies, interventions, and misdiagnoses, I'm a bit spent. It's exhausting. Still, I always hope others can benefit from our experience and NFT is still relatively new to most people.

One of the benefits of NFT, especially for those who like objective/empirical data, is that you actually can get evidence of improvement with brain maps. When DS started with NFT #2, his excessive delta waves dropped by half from the end of Oct to the middle of Dec. His low beta brain waves also increased during this time as well. So it's not something subjective. You get actually compare brain wave activity over periods of time. And then you can explain why a child is behaving so differently or why his behavior is so improved due to the increases/decreases in brain wave activity. With other therapies, this just isn't possible or viable.

I have an update too, my DD is still doing great, she just seems so much more comfortable in her skin and she smiles a lot more. She is making better choices and taking better care of herself of her own volition (diet, exercise, sleep, etc), she is so much more fun to be around these days. She has set some serious goals for herself and she is working towards them. (YAY!)

All that said, I was so impressed with the turnaround that I started to do more research and I found a system that takes the guesswork out - it trains the whole brain simultaneously so there is no risk of over-training one area. That was my biggest concern about finding a super experienced practitioner and even then hoping they didn't screw up.

The system is called NerOptimal by Zengar. I have decided to buy the system and open my own office so I can make it available to as many people as possible. Since I am not a therapist or doctor, I will just be offering this as a stress relief training program during hours that I am not at my real job. The company also sells personal units that you can use at home yourself but they are pretty pricey.

The research coming out is very encouraging. The really exciting news is that the American Association of Pediatrics has now moved biofeedback (same thing as neurofeedback) to "level one best support" for Attentional and Hyperactive disorders, making it on par with Ritalin. See the 6th bullet down on the AAP website:
http://www.aap.org/en-us/advocacy-a...tal-Health/Pages/Primary-Care-Tools.aspx

I wish I could do this. I would love to buy the equipment and operate it on a pt basis. May happen some day. I'm very happy that you can do it, Nik.

I know DS's 1st neurofeedback provider trained a number of parents to do neurofeedback on their children. I know the equipment was pricey, but that these parents ended up buying it because they were in remote areas and could then Skype with DS's neurofeedback provider. I bought the CES (cranial electrotherapy stimulator), which can help when you're driving through rush hour and it's very stressful. I didn't buy the Roshi machine either, but I heard that can work as a stress reliever too.

AAP is really behind the eightball with neurofeedback. Imo, they should be recommending neurofeedback 1st before medication or anything else. If they suspect ADHD or something else, you should get a brain wave activity map. In our case, I would have saved ourselves a lot of time, money, aggravation, and a misdiagnosis of ADHD.

It's very annoying and frustrating that neurofeedback could have given us a definitive answer on whether our DS had ADHD and what was going on, but no one had a clue what neurofeedback was or recommended it to us. That's why these discussion boards are so vital for 2e parents in particular.

Neurofeedback has really helped with DS too. He's calmer than he was. I'm thinking though that he might need another 10 sessions in the summer. DS is still a bit impulsive, inattentive, and distracted easily. He's still a bit scattered. I still cannot get him to get up, get dressed, brush teeth, do his 'work', etc.; bear in mind DS is 7 and had a brain injury rather than ADHD. I'm thinking that DS's plagiocephaly was severe (he wore two helmets as a baby, nearly three) and thus the brain wave activity (excessive delta brain waves) became rather intractable. Despite this fact, DS is pg and radically accelerating through curriculums, when I actually get him to sit down, pay attention, and do his 'work'.

I wish we could have done 20 sessions with the 2nd neurofeedback, but the rule is 10 weeks, probably due to insurance. After doing neurofeedback for 10 weeks, you take a six-month break before resuming another 10-week session. Since the insurance covers the neurofeedback at this practice, I'll play the game and follow the rules but no one said I had to like it.

Studies on neurofeedback (for ADHD, Asperger's, ASD) referenced by nih pubmed:

- "Efficacy of neurofeedback treatment in ADHD: the effects on inattention, impulsivity and hyperactivity: a meta-analysis" Clin EEG Neurosci 2009 Netherlands http://www.ncbi.nlm.nih.gov/pubmed/19715181
- "Neurofeedback outcomes in clients with Asperger's syndrome" Appl Psychophysiol Biofeedback 2010 Canada http://www.ncbi.nlm.nih.gov/pubmed/19908142
(Pardon a layman's question - does nih pubmed reference only peer-reviewed studies?)

There is also a review re. ASD:

- "Neurofeedback for autistic spectrum disorder: a review of the literature" Appl Psychophysiol Biofeedback 2010 US http://www.ncbi.nlm.nih.gov/pubmed/19856096

Well, it has been a super long time and I just came across my log in info so I thought I would post a 2 year follow up for the benefit of anyone who winds up on this post after searching neurofeedback.

My DD is still doing GREAT!!! She has had some follow up Sessions using my NeurOptimal® system (because she can). She enrolled herself in Community college, passed her Freshman English class, Clepped out of the rest of the English classes and she is set to graduate this year. WooHoo! She also has a part time job and has been taking Karate and helping teach the children's classes. She will get her Black belt this year too! She has made friends, has discovered an artistic talent and just has a love of life again. This all could have gone so very differently for her, I feel so thankful that we found neurofeedback.

I have now been seeing people in my office for almost 3 years and so far everyone has seen benefit. Fairly quickly too, within 3 to 15 sessions. I am doing my best to make it affordable to anyone who wants it. I have even been known to barter when necessary .

It is so rewarding to see the shifts in people's lives no matter what they come in with. I bought a second system so parents can train at the same time as their children, the transformations for both are remarkable (mom stresses out less about child, child can sense that, they both bond in a new way etc). Really wonderful stuff!

I also bought 2 Personal systems which I rent out for home training, this makes it much more affordable for families to train and for kids on the spectrum who may want to train more frequently. The results are just as incredible for the renters training at home as they are for people coming into my office.

I hope some day these systems will be as accessible as your local gym. Seriously, everyone benefits!

This is an old post and since then a lot of great books hand studies on Neurofeedback have come out

Here are some other resource for sharing experiences about neurofeedback:

www.neurofeedbackforums.com

https://www.facebook.com/groups/Neurofeedbackusers/

https://www.facebook.com/groups/279001309263902/

I highly recommend looking into it for the whole family, seriously, parents of 2e children deal with a lot of additional stress and anxiety and this can really help with that which in turn helps the child. Also, a lot of us have the same issues that our child has maybe less severe but it makes it hard to be a good role model. I found that my own training allowed me to step back and let my child blossom in a way I never could before because my own anxiety about her failure to thrive or live up to her abilities. My feelings of failure and guilt as a parent for not being able to help her more, for not getting the right supports early enough in school for not having enough patience with her, for not seeing her struggles as real early enough - all that baggage is gone and our relationship is much better because of it.