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

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.