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

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!