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Dd has had 3 weeks of the zengar neurofeedback at twice a week, and I wanted to give a little mid-progress update/discussion so that the nuances don't get lost in any end result.  

 

Her initial impression, after the first session, was that she felt like she expected one would on meds (flat), and the effect lasted about three hours.  

 

We did two sessions that way, and the next week began summer swim lessons.  She was by herself for two weeks in the class and the instructor had her swimming laps, laps, laps for 30 minutes straight, meaning she was panting most of the time and tired.  (She's very low tone.)  So she began to complain of fatigue, but of course there was an explanation.   ;)

 

This week, week 4, we're off, and she's still complaining of fatigue.  She describes the fatigue as being on the level of what she had with her spanish class when she was doing SO much homework.  She's still getting swim lessons, but this new session has 3 girls, none of whom really want to be there, hehe, and a plump teacher who's happy to have the whole process be very sedate.  They supposedly worked on turns/flips, but they were hugging the sides like it was a jaccuzzi more than doing anything, hehe.  

 

That's all to say I think her current fatigue is more directly attributable to the neurofeedback than the swimming.  She is becoming a little scared, so we went back and read here https://www.zengar.com/neuroptimal-neurofeedback-software-features Basically it's a bunch of vague jibberish, but when I read it to her and said what I thought it meant, she said that's in fact what it seems like is happening.  So I *think* what's happening, based on the description and dd's comments, is that the audio and video inputs break/blip any time the brain loses focus.  Your brain wants the audio/visual to continue, so it comes back and refocuses.  It's passive for the user, not like they're trying to do anything.  It's not picking specific waves like the more targeted ($$$) neurofeedbacks but looks at a variety of targets.  She says that she just figured the earbuds were REALLY HORRIBLE, because they sound so crackly...   :lol:  

 

So I haven't asked the OT, but I guess that's how you know when you're done, when you no longer have so much crackling, hehe.

 

Her overall emotional stability is improved and her ability to engage and stay focused with her geometry (which has been horrific) is improved, noticeably improved.  However this fatigue is serious, serious, serious.  Like she was really wigging out serious.  We've talked through it, and with this new understanding that basically it's a passive way of getting the brain to attend, she realizes what it's doing.  It's extremely fatiguing because it's getting her brain to attend and trying to get it to figure out HOW to attend.  What I think it's fascinating is that it's using auditory as well as visual inputs.  Some of the neurofeedback methods I had looked at I *think* focused on visual.  This seems more comprehensive, and it makes me wonder if she could get improvement, in the long-run, with handling background noise, which by all accounts is an auditory attention issue that responds to meds.

 

So for now, extreme fatigue and her sensory is off the charts crazy.  We have one more session next week, then she gets a month off to go to a couple camps.  I'm *hoping* that she finds the fatigue improves and that what remains is some new skill in focusing.  That would be amazing.  It's not pretty though, and we're not going to be able to plow through geometry or biology labs right now.   :glare:  I don't know what you would do if you were doing it during the year.  Admittedly she always has an extreme reaction to everything and has no ability to suck it up.   ;)  We'll probably continue to coddle her and get her through, sigh.

 

I have tentatively scheduled ds to begin the neurofeedback mid-August, after swim lessons finish.  I'm scurrying trying to get as much Barton into him by then as I can, because if he responds at all like this we're going to have some lost months.  It will be worth it if he comes to the other side better, but WOW.  Today he was telling me that invent and event are so similar there's really no need to bother to distinguish.  That's the meta-linguistic level EF issues showing up.  It will be interesting to see if the neurofeedback can bump some of that by helping him *attend* to the meta-linguistics better.  Dunno.  If not, spelling the next 15 years is gonna be ugly.  

 

Anyways, that's where it's at, ugly and all.

 

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Yes, she's sleeping well, but what's more interesting is that *to me* she seems to be more alert when she wakes up.  I've commented for years here that she takes an abnormal amount of time to come to.  According to what I read online, the theory is too much sleepy waves during the day and going even deeper into the sleepy waves (beta, gamma, whatever) at night, making them very slow to come out.  That seems to be changing.  She wakes up more smiling, more middle of the road and not so zombie.

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What does the OT say about the fatigue?? It sounds like your daughter is really responding to the therapy, which is amazing, but maybe it is too much?

 

My son has been doing neurofeedback once a week since the fall. We do it at a family psychologist office. The psych asks for verbal and written feedback from me every week and adjusts the plan depending on what I say. Sometimes he will target a particular problem (and one part of the brain) but then he might tweak the timing, do it for a shorter or or longer time. Sometimes he'll alter his plan altogether. We had to discontinue one approach because my son was very emotional for the first couple days after sessions. Our psych does have a fully stocked office with numerous machines so maybe that gives him extra flexibility, but I do think that there is a lot the practitioner can do to make adjustments.

 

Re: fatigue, my son is usually sluggish and exhausted for about fifteen minutes, to the point that he flops around and leans on me on the way out. But in a very short time, he perks up and generally seems more organized and happy. He almost always has a good day. I have done neurofeedback a couple of times and felt extremely relaxed and alert, not fatigued at all. The fatigue you describe sounds extreme--I wonder of there is something the OT can do about it.

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Camino, that's interesting.  How old is your ds.  Is he under-sensitive, over-sensitive, or typical for sensory?  And what is the system your ds is doing?  Zengar does a "dynamical" (I know, corny) approach, meaning they look for brain waves that are unstable and target them.  Most of the other neurofeedbacks are "deep" and pick particular brain waves to target.  And does the system your psych is using require active focus, or is it more passive?  I'm just curious.   :)

 

The psych neurofeedback in our area would be dramatically more expensive, with $500 upfront costs and then $150 for sessions, vs. the $80 we're paying doing Zengar through an OT.  I just couldn't afford the psych versions, kwim?  And I wasn't thoroughly convinced deep was the only way.  I figured for such a huge price difference, we could try the more vague version and see, lol.

 

Yes, her fatigue right now is pretty severe.  But remember, she's also very, very sensitive with her sensory stuff.  Little things are mountains and world-shattering with her.  She's also low tone and doing some pretty vigorous swim lessons right now (way more than her normal activity level).  That too causes fatigue.  

 

She'll be off in July, which will give her a chance to recover.  I suppose we could consider altering the pace, but I don't see the point.  She complained just as much about VT, and there was no need to slow that down.  It was just hard for her and came out with a lot of fatigue.  She hardly did any school work during the months of her VT either.  She just has this very dramatic The World is Ending kind of presentation.  

 

It will be interesting to see if ds bounces back as you're saying. 

 

See the thing that we're not discussing is what it feels like to change your brain at 16, kwim?  I was told some kids who start meds at this later age DON'T like the effect and how they feel and resist.  It's almost like they were used to living in jet ski mode all the time, using their impulsivity and ADHD to ride through things, and when you balance them out to pontoon mode and get more stable they don't LIKE it.  That's something I really can't sort out.  I don't know what she's feeling, but I tend to think it's not all one thing or another (just fatigue or just flattening), kwim?

 

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Yes, she's sleeping well, but what's more interesting is that *to me* she seems to be more alert when she wakes up.  I've commented for years here that she takes an abnormal amount of time to come to.  According to what I read online, the theory is too much sleepy waves during the day and going even deeper into the sleepy waves (beta, gamma, whatever) at night, making them very slow to come out.  That seems to be changing.  She wakes up more smiling, more middle of the road and not so zombie.

Do you happen to have links?  Just wondering because I was uber zombie in the morning for many years.

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Do you happen to have links?  Just wondering because I was uber zombie in the morning for many years.

It was one of the providers' websites.  You might just google beta theta neurofeedback and see what you get.  Also metabolic issues and infants would cause problems with that.  :)

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See the thing that we're not discussing is what it feels like to change your brain at 16, kwim?  I was told some kids who start meds at this later age DON'T like the effect and how they feel and resist.  It's almost like they were used to living in jet ski mode all the time, using their impulsivity and ADHD to ride through things, and when you balance them out to pontoon mode and get more stable they don't LIKE it.  That's something I really can't sort out.  I don't know what she's feeling, but I tend to think it's not all one thing or another (just fatigue or just flattening), kwim?

 

I have a feeling this is what our psych means when she says that meds don't work as well for adults--it's late enough in the game that they don't roll with it as well.

 

My older one feels this just a bit, but he experiences is at inhibiting and self-consciousness, and of course, that's one of the biggest reasons he's on them, lol! 

 

Jet ski and pontoon modes...nice terms. I am going to borrow them.

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I have a feeling this is what our psych means when she says that meds don't work as well for adults--it's late enough in the game that they don't roll with it as well.

 

My older one feels this just a bit, but he experiences is at inhibiting and self-consciousness, and of course, that's one of the biggest reasons he's on them, lol! 

 

Jet ski and pontoon modes...nice terms. I am going to borrow them.

We're sending her to drama camp for a couple weeks, so I figure that time with teens will be good to help her move beyond the new, unfamiliar feelings and start focusing on something else.  I'm hoping that will help her assimilate it.

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Camino, that's interesting.  How old is your ds.  Is he under-sensitive, over-sensitive, or typical for sensory?  And what is the system your ds is doing?  Zengar does a "dynamical" (I know, corny) approach, meaning they look for brain waves that are unstable and target them.  Most of the other neurofeedbacks are "deep" and pick particular brain waves to target.  And does the system your psych is using require active focus, or is it more passive?  I'm just curious.   :)

...

 

See the thing that we're not discussing is what it feels like to change your brain at 16, kwim?  I was told some kids who start meds at this later age DON'T like the effect and how they feel and resist.  It's almost like they were used to living in jet ski mode all the time, using their impulsivity and ADHD to ride through things, and when you balance them out to pontoon mode and get more stable they don't LIKE it.  That's something I really can't sort out.  I don't know what she's feeling, but I tend to think it's not all one thing or another (just fatigue or just flattening), kwim?

 

My son is 9. He is most definitely over-sensitive emotionally! He used to be very much over-sensitive as far as sensory processing goes, too. Too many people, loud noise, a lot of activity, etc, would get him extremely excited but eventually would become so overwhelming that he would kind of turn off his systems and shut down. I think anxiety has always been the primary challenge for him and so the sensory responsiveness would fluctuate with his level of anxiety. And it still does to some extent but he also kind of grew out of the sensory over-reactiveness around ages 6-7. He is on the sensitive side now but much closer to norm.

 

The psych uses a few different approaches. They are all passive, I think, and quite intuitive. I ask a lot of questions but I only remember the name of the system I used myself (and that was active... I had to concentrate to raise the level of a bar to the top of a thermometer... it was hard for me!). My son plays a video game where he controls the speed of the car. I think this part of the session focuses more on emotional regulation. Most of the time, though, he watches a movie, where the screen goes blank and the sounds lowers when he loses focus. I hope I can do more myself!

 

I'll find out more specific so we can keep discussing and compare notes!

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