Mendability

[nature girl]

Have any of you heard of, or tried, the Mendability program? It's mainly a sensory integration program, looks like it's basically exposing kids to more than one sense at one time...I'm curious whether it makes sense to try it. My daughter has been balking at any neuroplasticity/reflex integration activities I try, and I'm drawn to this because it looks like it takes so little time and effort on the child's part. But it also looks a little too good to be true, and I can't find peer-review studies. Thoughts?

Mendability

[Lecka]

It doesn’t look good to me. 

 

[nature girl]

Yes, I know it does seem too good to be true. But I started looking into it because someone told me they'd seen significant improvement after a few weeks using the program, so I wanted to see whether anyone here had any experience.

[Lecka]

There is always going to be someone telling you they saw significant improvement after a few weeks.  

Also, I think kids can always benefit from parents feeling optimistic about things, as well as positive time spent connected with an adult.  

So I think there can be a lot of benefit to a program without it exactly being the program.

But I don’t actually know, lol.  I just looked at the website and had a strong feeling of skepticism.  

[Lecka]

Really I think sensory is important for autism, but I think it is a real shame to promote it at the expense of language and behavioral interventions.  

If someone is already doing other interventions and wants to also address sensory — I am totally in favor of that.

And how to address sensory?

Is a “name” program needed?  I seriously doubt it.  

 

 

[PeterPan]

Did you look at the plans and levels of support? They have 3 levels, a maintenance mode you can't go into initially, a coached level where you pay $159 and get online lists of activities and coaching, and then a full therapy level where you're actually talking with an OT and getting customized help. Online therapy is VERY popular now, because people live in areas with limited access. I might live outside a major city and have access to a ton, but for someone an hour or 90 minutes west of me, the situation is radically different. For that person, paying $1000 a month to get essentially unlimited access to an OT might start to seem like a deal. It's not, because it's outrageous. Around here an OT bills for $80-125 an hour. That means you're paying for 8-10 hours of OT a month, in person OT rates, which would be WAY more than ANY person would ever do. So just the fact that they offer a pricing at that level tells you they're sorta pushing the limits of reasonable. But the fact that someone is trying to offer online OT? No shock. There are places doing online SLP, so why not OT.

As far as the exercises, everything in those pictures was generic, the starting points low, and the suitability to a child like mine worthless. Good OT uses things in novel ways and sometimes uses equipment you don't have. Good OT involves set-up. Good OT is also about the relationship with the child, that we're assessing their zone as they work, working on compliance, calming strategies, etc. You can't get any of that in a phone consult. 

What they're offering is certainly not worth $1k a month. That's definitely outrageous, and someone would need to be of extremely limited access to consider that sane. For the lower pricepoint, well there you're getting canned activities, lists. If you want lists, go buy a book or look on pinterest. 

The other thing you can look at is the claims of the company. This company is making claims that are kind of vague. (recover???) Also, they're only saying they're "enrichment." By being so vague, they can imply a market, not actually state it, and then not get into trouble legally for not delivering. They're not saying they'll improve your child's self-regulation, integrate his retained reflexes, improve his ability to write comfortably, etc, the kinds of things an OT would have and deliver on as goals. No, they're just making the vague promise that you'll get enrichment and somehow recover.

I have no doubt the activities they list are fine. The starting points in the pics look really low. Walking on pillows? Hands in a box of toys behind a screen? Isn't that stuff you do already? That's moving up for kids who are severely affected, kids who weren't getting those experiences before for other reasons. That's stuff you've probably already done naturally. The OT activities your dc is ready for, as a dc in a mainstream setting doing mainstream PE, etc. etc., are probably much more sophisticated. Our OT had ds doing spy-themed games every week, combining obstacle courses (which required equipment btw) and lists of activities that alternated with work on zones. Part of the BRILLIANCE of what she was doing was in the subtle way she got him to make choices to create the plan for the day. That's compliance work (the ps currently considers my ds ODD), and frankly I would not have wanted to be doing it by myself. Once she got him doing that, then I had a strategy I could use. But this is stuff good OT does. Why should anyone pay $1k a month to be told to put their hands in a box of mystery toys, when what they need is something more complex? Oh they'll get it, but they won't get the person to DO it. The value of OT is not only in the lists but in the interaction as the therapist DOES it with them. We had this really quiet OT, and ds had to modulate and comply with this totally different type of person. He was making conversation with a totally different type of person. I was paying $125 an hour, but I was getting that in person. 

Your starting point isn't the starting point of the people in the pics, and you probably have better access. Do you have other options?

[PeterPan]

6 minutes ago, Lecka said:

Really I think sensory is important for autism, but I think it is a real shame to promote it at the expense of language and behavioral interventions.  

If someone is already doing other interventions and wants to also address sensory — I am totally in favor of that.

And how to address sensory?

Is a “name” program needed?  I seriously doubt it.  

 

 

Bingo. Language and behavioral MERGE. This company has cherrypicked off one thing. The reason OTs are so expensive is because they have to bring it ALL to the table. Just the prep our OT was doing each week was time. Now maybe she was doing the same activity across a bunch of kids, dunno. But she definitely was prepping maybe 10-15 minutes each week for my kid, because she was coming in with custom activities she had made, things she had clearly prepped for him, EVERY WEEK.

I've also had OTs who didn't do that, btw. It's not like they all deliver. But we finally had one that we LOVED. She went on maternity leave, sigh. She should return when our new scholarship starts, yay.

[nature girl]

DD was in OT for many months, and I was really turned off by the therapist (and it was a long drive), so we gave up. It's the only option we have in the area.

I'm asking the person who wrote to me for more specifics, because I want to see whether there's more to the program than there seems to be. But all you're saying makes sense, thank you...I may try some of the activities on my own (diffusing scents while having her feel different textures or listen to music, etc.) to see whether there are any improvements. But yeah, the price does seem unreasonable if that really is all there is. (I did just find one peer-reviewed study with 1,000 kids, and they had impressive results, but it was only ASD kids, and it's hard to tell what level of impairment they had before starting.)

[PeterPan]

Yes, it's the starting point that is the issue. I'm looking at those pictures, and we have kids like that where we go for services. They aren't kids with your dd's starting point.

I really don't understand what you're wanting to make happen. She's verbal and able to express for herself what feels good. Does she have issues with sensory matching? Like if you read stuff for ABA and VBA, they're talking about sensory matching. So https://www.amazon.com/New-Touch-Sensory-Perception-Memory/dp/B0006HB9GG/ref=sr_1_1?ie=UTF8&qid=1527088592&sr=8-1&keywords=the+touch+game&dpID=51wS4yBDMoL&preST=_SY300_QL70_&dpSrc=srch a game like this, which used to be sold by Timberdoodle btw, can be sort of a mainstream way to work on that. But does your dd have issues with sensory matching? I doubt it. She just has retained reflexes (unless you got them integrated) and is very dysregulated. And some of that is about finding what is calming to her and what is stimulating to her and making lists. You just go through it and make lists, like types of music, etc. 

Is your dd under-sensitive or over-sensitive to sensory? Are you trying to calm her system? I don't know, the stuff I'm seeing in those pics isn't even stuff therapists have wanted to do with my ds, and he's ASD2. His starting point was beyond that, and your dd is even more functional. What are you trying to do? 

OT is both good and a crock at the same time. Like if I go to Disney for the day, I feel STELLAR. I feel stellar because I just got all the sensory my body craves. I got music and lights and gentle (or not so gentle) motion and the input and pounding of the walking and... It's just really amazing for my sensory. Next best thing for me is to go to the gym and lift weights. I could pay out the wazoo for OT, but reality is my body just has this really high set point and need for sensory. There is no making it go away, and the emphasis becomes helping people find strategies to live with it. 

So like say you have someone who is so sensory defensive they can't tolerate the sound of a toilet flushing. That can happen with ASD2/3. That's pretty debilitating. You do some OT and the kid can handle the toilet flushing. YES the parent is going to call that recovery!! But was that YOUR dd's problem?  My ds used to scream and hum when the hand driers were on in the bathroom. It was sensory defensiveness. We did OT/PT, got some retained reflexes integrated, it chilled. That you could call recovery. But some people's stuff is just more this mundane level of sensory dysregulation and wanting to know how we can keep our bodies feeling good. That's more like maintenance, not a cure, at least as far as I can tell. 

My ds has gotten more improvement from the $69-79 genetics test from 23andme than we've gotten from thousands of $$$$$ in OT. 

[PeterPan]

Lecka is really spot-on about the confounding factors like the bump from getting more interaction, more positive interaction, more hopefulness in the parents, etc. That's HUGE and it's true with any therapy they evaluate. So they got 1,000 parents to spend 15 minutes a day doing something with their kids and things improved. Are we shocked? 

What are you wanting to make happen? What are you needing? My ds actually has OT goals written out because they have to report to the state what they're working on and whether they're accomplishing it. What are your goals?

Most OT stuff is set up as voodoo. They sorta do stuff and hope it gets you somewhere. When you have IEP goals or they have to make really concrete goals and report to the state, it gets more interesting. Like my ds' IEP will have a goal like complies by working from a list for x number of minutes doing x number of things on the list with x number of prompts/redirects. So when they're bringing in lists, that's why. It's a really concrete goal, not voodoo. And like I said, I'm all over the value of sensory input, but it's vague, voodoo, more of a maintenance/lifestyle issue. 

What they're going to do in most classrooms is have a time for it and a space for it and a set-up. She was in school. Did they have that? Did they have a resource room or do sensory breaks? You can create some structure and weave it in. But to me, it's pretty personal what they like, what feels good. And for my ds, sensory is good but it's not like this cure-all. He really needs the underlying chemical foundation of stability, and then the sensory and other things are another piece, the frosting. But there's the question of what is MOST foundational, most causing the instability, what would get you the most progress. Every approach wants to say theirs is it in a way. 

Sensory doesn't have to be in the moment to be valuable. Like if you know you need sensory, you could be doing it at another time of day and get the carry-over. Like if I take my ds to the gym and run him with weights (which I can't do right now because I have bronchitis, ugh), he's calm the NEXT DAY. It's not just a 10 minute thing but it actually has carry-over power. So then you get into lifestyle and what could you do in the evening. Not every kid needs this little box of fluffy things, kwim? My ds has fast twitch muscle fibers. We found that in the genetics testing. He actually needs to RUN. He seriously needs to run. So for him, to get his sensory with big motor, sports, etc. just makes more sense. It needs to fit the child.

[nature girl]

We actually sent in a 23andMe sample for her a couple of weeks ago based on one of your posts. ? 

Thanks, OhE, this all makes a lot of sense. I did also ask the woman who'd recommended it whether her daughter has SPD as well as ADHD...We've got some mild SPD going on here, she's somewhat sensory seeking, but also over-sensitive to touch, there are some issues with clothing and having her hair brushed, but nothing severe.

You're right that our main issue is dysregulation, and mostly while unmedicated...We've been working on that for years with Zones, We Thinkers and the use of tokens, and it hasn't gotten much better. Recently it's actually gotten somewhat worse, which is why I'm looking into other options. The woman who wrote to me said that her daughters moods and aggression decreased substantially after starting, but again I'm waiting for clarification on whether she had sensory issues. It makes sense that sensory integration would help in those areas when you're dealing with SPD, but probably not when it's as mild as we're seeing.

[PeterPan]

In our experience, retained reflexes were underlying the issues with touch. Is there more you can do there, like ordering the Pyramid of Potential dvd? Anything you do there will pay off.

I don't think it's that your SPD is mild. It's affecting her life. It's just that people can say things that are vague (moods, aggression) and say they get "better" and they don't necessarily mean the same thing as I mean when I say my ds is violently aggressive, attacks people, has given people concussions, has an ED placement in his IEP, and needs things to take down his methyl levels. Obviously it sounds pretty trite to say touching fuzzy things would solve that. The sensory would be nice, but he's got serious serious biochemical issues underlying his aggression. So we have to make sure we're speaking the same language even and saying the same things.

When you get back your results, post! I'm crazy into that stuff right now and we can gab. :D  When I found my ds' VDR gene issue, we put him on K2 along with the D. That seemed to help his sensory quite a bit. When his 5HTP is low, he's more severely sensory-seeking. 

But see, for us, we've already done years of OT with tons of OTs. I know the limits. I wish we could make it all better and make it go away, sigh. I know. When do your 23andme results come? If it's not going to be too long, maybe work on retained reflexes and just bide your time? Surely you're only talking 2-3 more weeks, sigh. This other company will still be there. You could actually make some progress in 3 weeks if you pick some reflexes to work on. 

[PeterPan]

One of the other things about working with an OT for self-regulation is they're working on raising the dc's own awareness. I think sometimes we just hit limits on what the dc is ready to do for themselves. Or we have to raise supports to get carryover. But I'm not sure everybody is ready to go all the way, just because the instruction is good. They're still young. You have that interoception piece, whether they're self-aware enough to do the regulation for themselves, sigh. What they can't do for themselves, they have to have structured and have higher supports for.

Does she have a space where she's safe to be as her meds wear off and she's coming down? Is she pretty maxed out at that point? Is there anything you can improve with routines to make things safer? 

The other type of person to look for is a BCBA or behaviorist. At some point, when you're talking ADHD and SPD, it merges into the spectrum. Or you say screw the system that hasn't labeled it yet and you just look for what WORKS. And I'm just telling you that the scenario you're describing is something I would talk over with my behaviorist and get help for. So if you can get a behaviorist, somebody who's thinking more globally and looking for patterns and looking to problem solve, that's another way.

Our severe b&w pigeon holing (this is spectrum, this is not) might not be helping us here. Severe ADHD, which is what you've got, merges into the spectrum. 

This is the kind of scenario where you're going to look back 5 years from now and connect dots and wonder why you didn't see it. These are a severity of question people with straight ADHD don't have to ask. Diagnosis is screwy and fallible, very, very fallible. Look to someone else for answers, look outside your current labels. All that matters is what WORKS. So if right now you have situations a behaviorist can help with, get a behaviorist. And yes, for what you're describing, I'd be wanting a behaviorist, not an OT.

[nature girl]

10 minutes ago, PeterPan said:

In our experience, retained reflexes were underlying the issues with touch. Is there more you can do there, like ordering the Pyramid of Potential dvd? Anything you do there will pay off.

I don't think it's that your SPD is mild. It's affecting her life. It's just that people can say things that are vague (moods, aggression) and say they get "better" and they don't necessarily mean the same thing as I mean when I say my ds is violently aggressive, attacks people, has given people concussions, has an ED placement in his IEP, and needs things to take down his methyl levels. Obviously it sounds pretty trite to say touching fuzzy things would solve that. The sensory would be nice, but he's got serious serious biochemical issues underlying his aggression. So we have to make sure we're speaking the same language even and saying the same things.

When you get back your results, post! I'm crazy into that stuff right now and we can gab. ?  When I found my ds' VDR gene issue, we put him on K2 along with the D. That seemed to help his sensory quite a bit. When his 5HTP is low, he's more severely sensory-seeking. 

But see, for us, we've already done years of OT with tons of OTs. I know the limits. I wish we could make it all better and make it go away, sigh. I know. When do your 23andme results come? If it's not going to be too long, maybe work on retained reflexes and just bide your time? Surely you're only talking 2-3 more weeks, sigh. This other company will still be there. You could actually make some progress in 3 weeks if you pick some reflexes to work on. 

I'd looked into Pyramid of Potential awhile back...So do you think that's worthwhile to invest in? I tried doing some reflex integration using youtube vids awhile ago, and she was SO resistant. She'd just break down whenever things got remotely hard, even simple things like hand exercises for Moro, so I gave up after a few days. ? 

I'll definitely post when we get our results. They said 6 weeks? So we may have another month to go, but their progress bar says they've done the extraction and such already, so I'm not sure how much time it might take. (Did you go through Promethease after 23andMe? Or is there another analysis program that gives the info. you found? Looking at Promethease, I can't find much of the information it seems like you got for DS.)

 

[nature girl]

13 minutes ago, PeterPan said:

One of the other things about working with an OT for self-regulation is they're working on raising the dc's own awareness. I think sometimes we just hit limits on what the dc is ready to do for themselves. Or we have to raise supports to get carryover. But I'm not sure everybody is ready to go all the way, just because the instruction is good. They're still young. You have that interoception piece, whether they're self-aware enough to do the regulation for themselves, sigh. What they can't do for themselves, they have to have structured and have higher supports for.

Does she have a space where she's safe to be as her meds wear off and she's coming down? Is she pretty maxed out at that point? Is there anything you can improve with routines to make things safer? 

 

We've been taking weekend breaks to reduce tolerance, which is when we see most of our issues. So it's not withdrawal (we actually see it more on the 2nd day off than the first.) Evenings have actually been pretty good recently, mornings as well, although we have had a couple of evenings with a 5 minute aggressive interlude which really scared me, and made me want to figure out better answers. Again it's mostly weekends, though. And because she's okay for most of the weekend (super hyper, no focus, but nothing severe), I'm not sure how we can modify full days in order to prevent the outbursts. (I should probably go back to doing heavy work, though, which I've slacked on.)

[PeterPan]

Pyramid of Potential is what the PT used that we got success with. I hate to say oh yeah spend $100 and it will be worth it, but that's what the PT was using that we used. I think you could probably sell it on ebay when you're done and recoup a chunk of your money. And yes, if she's having meltdowns, that tells you you've found your thing. It also tells you, unfortunately, that her system is super, SUPER sensitive. With my ds, who is under-responsive, we could use distraction to get him to tolerate things. We started small and used high value distractors like an ipad that would have a brand new app. It was THAT intense, that hard to tolerate. Now for dd, she's super super over-sensitive. For her, she needs tiny tiny amounts at a time and something like weight or tight clothing to calm it back down. It's just so hard for her to tolerate. So it kind of depends on the kid.

Yes, it sounds like you could get some mileage out of work on retained reflexes. I'm no help on how to work on them, because I paid someone. And I went through at least 6 worthless OTs before I got referred to a PT who was worth half her salt for them. Seriously. Like the most basic, foundational thing to work on, and the OTs were WORTHLESS. You want to talk about getting pissy. You know how much I've spent on OT?? Don't get me started cuz I can really rant here.

See if this gets you anywhere. I had the link lying around in my browser. https://www.toolstogrowot.com/blog/2016/01/11/primitive-motor-reflexes-their-impact-on-a-childs-function

[PeterPan]

I just got beads from this vendor on ebay and am happy with them. With one 35 pound box you could make 3-4 things for your dd. They're very dense compared to the previous box of poly pellets I got from another vendor. They're not as rounded, so the blanket will need a fleece cover or something. But as far as as way to do something affordable that, boom, will probably work, this would be something. You can make a stuffed animal lap pad. You can make a weighted blanket. You can make a weighted collar. 

I made my dd a 15 pound weighted blanket, and she is playing around with how to use it for her sensory. I need to ask her if she slept under it again last night. She find it very stimulating (she's hyper-sensitive, remember), but she's been in a really good mood, wow. For your dd, you could make a weighted blanket (10% of her body weight plus 1-2 pounds) and then put her under that as her meds wear off. Just have a routine that we go cocoon for 20 minutes, kwim? Put on a mindfulness cd, put her under the weighted blanket...

https://www.ebay.com/itm/35-lbs-Plastic-Poly-Pellets-Cornhole-Bags-Filler-Shooting-Rest-Heavy-White/322097189551?ssPageName=STRK%3AMEBIDX%3AIT&_trksid=p2057872.m2749.l2649  These beads are great. They're super dense, so they don't need as much volume to get the weight. With my dd's blanket (this is sorta in the weeds) 1/4 cup of beads was about 38 grams. I did 180 pockets (4" squares) to make an adult size blanket. It's kinda bulky. The vendor lists the density and you can do the math. It was 10 oz to 1cup of beads. 10 oz=283 grams. So almost twice as dense, meaning less bulk. Means less shifty, less bulky, to get some good, intense sensory input in a small person. So now I'm going to make ds a blanket. I'm probably gonna go 10 pounds for him, because he eats input, just eats it up, and it will need to be in a smaller space. These super dense beads will be PERFECT for that. 

Sewing a weighted blanket is not hard. You can buy them too, but they're $$$. If you can sew a straight line and have a few pins, you can do this. For dd's, I used a microfiber sheet from walmart. For ds', I'm gonna find something sturdier or use two layers, haven't decided. Doesn't take long. You can measure the beads by volume or get really picky like I did and use a scale. I've got an inexpensive ($15?) digital scale I got through Home Science Tools, and it's totally adequate for this. You just tare the pan, pour your volume in, adjust, and pour with a canning funnel into the channels you've sewing. When all the channels are sewn, sew across the row and repeat. It helps if you're on 50mg of prednisone.

[PeterPan]

Yeah, our days before getting the reflexes integrated are like a bad, bad memory. Seriously work on that. Start a thread, figure out what is happening, make data, start slowly, try strategies, use distractors, take data and see what happens. It was an awful stage. And you really want to work on them 4+ times a day. It's really the more the better. Less is not the same. Work on them 5-6 times a day even. Once we did that, once we got to the ok we're gonna do nothing but work on this and we're really gonna do this because it's awful and I can't handle doing anything else on top of this, we got our breakthroughs. Took about 3 weeks at that level, and I'm talking obsessive, like 6 times a day. But that's how we got our breakthroughs.

I don't know why everything is so overdramatic with me, sorry. But it was really bad. Like you want empathy on how bad it is? Yup, it was bad. Ds changed so much, once we finally kicked it up to that level, it blew the PT's mind. She KNEW it could happen, and it still blew her mind.

[PeterPan]

Ok, now I'm feeling like an idiot, because those pellets say NOT to use them for weighted blankets, that they make dust. Go figure. Well find other poly pellets. The idea is still brilliant.

[nature girl]

8 hours ago, PeterPan said:

Pyramid of Potential is what the PT used that we got success with. I hate to say oh yeah spend $100 and it will be worth it, but that's what the PT was using that we used. I think you could probably sell it on ebay when you're done and recoup a chunk of your money. And yes, if she's having meltdowns, that tells you you've found your thing. It also tells you, unfortunately, that her system is super, SUPER sensitive. With my ds, who is under-responsive, we could use distraction to get him to tolerate things. We started small and used high value distractors like an ipad that would have a brand new app. It was THAT intense, that hard to tolerate. Now for dd, she's super super over-sensitive. For her, she needs tiny tiny amounts at a time and something like weight or tight clothing to calm it back down. It's just so hard for her to tolerate. So it kind of depends on the kid.

Yes, it sounds like you could get some mileage out of work on retained reflexes. I'm no help on how to work on them, because I paid someone. And I went through at least 6 worthless OTs before I got referred to a PT who was worth half her salt for them. Seriously. Like the most basic, foundational thing to work on, and the OTs were WORTHLESS. You want to talk about getting pissy. You know how much I've spent on OT?? Don't get me started cuz I can really rant here.

See if this gets you anywhere. I had the link lying around in my browser. https://www.toolstogrowot.com/blog/2016/01/11/primitive-motor-reflexes-their-impact-on-a-childs-function

 

Thanks so much. So is Pyramid of Potential different from the videos you see on exercises to integrate reflexes, or different enough that it's worth the cost? Or is it mostly the same? And you did it 6 times a day for how long each session? (We MIGHT be able to do that on weekends, I don't see how we could do more than 2 on weekdays since she's already exhausted.)

It's a great idea to try to distract her during the exercises...I was playing music to try to calm her, but I bet a video would work much better. She loves them and I mostly keep her off media. (Trying to figure out how we might make that work with some of the exercises that require a lot of movement.)

It's amazing that it's worked so well for your DS, wow. I've always kind of dismissed reflexes, because her distraction/impulsivity seems so much more intense than just a result of sitting crooked or her body moving in the wrong way. But that you could see such a difference in aggression is amazing. I keep thinking reflexes might be part of the issue, because she was late in all gross motor, I had her in EI early and their exercises pushed her along probably faster than she should have gone to develop those skills naturally. ? Who knew...

[nature girl]

You mentioned that it costs $100, and I see there's a program called Growing Minds Every Day for a little over that. Their description is below, but none of those bulleted items is really an issue for her (other than attention), so I don't know...

Growing Brains Everyday is perfect for the homeschooler or a parent who wants to improve on the child's education. There is 150 day guide with new exercises throughout that, in 10 minutes a day will increase memory, processing speed, reading, writing and math!

 

This is designed to specifically improve the following:

• Anxiety and nervousness
• Attention, ADD/ADHD
• Hypersensitivity
• Memory
• Processing Speed
• Logic
• Auditory skills development
• Visual skills development
• Reading skills - blending, segmenting, phoneme manipulation
• Handwriting
• Organization
• Time mangaement and ability to tell time

[PeterPan]

PoP does have their own exercises, yes. Whether they're better than what you find on youtube, I can't say. 

[PeterPan]

Well there's definitely a lot of marketing to people with disabilities, sigh. The GBE says it's working on working memory, processing speed, reading, writing, math. Those are good things and we've talked about the value of working on working memory, etc. Probably fine stuff. PoP is specifically retained reflexes and it's showing you how to work on them so you nail 'em. There's nothing worse than trying to work on them and realizing you didn't make any progress because you weren't doing the exercises completely to get the effect.

I think you'll probably find you end up wanting to do ALL these things. It's more an issue of triage, prioritizing. The retained reflexes are super high priority.

[nature girl]

On 5/23/2018 at 12:18 PM, PeterPan said:

When you get back your results, post! I'm crazy into that stuff right now and we can gab. ?  When I found my ds' VDR gene issue, we put him on K2 along with the D. That seemed to help his sensory quite a bit. When his 5HTP is low, he's more severely sensory-seeking. 

 

The results came in!! That was crazy-fast, much faster than when I did my own and my husband's. Can I ask which service you went through to interpret them? Promethease? Or did you pick out on your own which SNP's to study?

I wrote to PoP, and the owner was really sweet...She gave me a link to an exercise to try, for integrating Moro, said to try it for 30 days, and if I see any improvement suggested a $20 download. Seemed very genuine, not out for money, really wanting to help, which made me feel good about the whole program. So we started the exercise yesterday...DD had somewhat of a hard time with it, but was able to do it. I'm guessing it's just because of her motor planning issues? Or maybe it shows she does have an issue with reflexes, I'm not sure. Anyway, it only takes 1 minute, and she was willing to do it, so we'll see! ?

[PeterPan]

I run the raw data through Promethease, KnowYourGenetics.com, and then I look up the individual SNPs from the PureGenomics lists. The PureGenomics list has the TPH2 gene, which tells you if that's underlying her anxiety. KYG is methylation cycle. Promethease is just overall. Only the promethease costs you anything.

If you get stumped or wanna gab, you can write me back channel. I find it all intensely interesting right now. 

Was the PoP download for all the reflexes? If so, that's a terrific deal for $20, mercy. Like totally share the link...

[nature girl]

8 minutes ago, PeterPan said:

I run the raw data through Promethease, KnowYourGenetics.com, and then I look up the individual SNPs from the PureGenomics lists. The PureGenomics list has the TPH2 gene, which tells you if that's underlying her anxiety. KYG is methylation cycle. Promethease is just overall. Only the promethease costs you anything.

If you get stumped or wanna gab, you can write me back channel. I find it all intensely interesting right now. 

Was the PoP download for all the reflexes? If so, that's a terrific deal for $20, mercy. Like totally share the link...

 

KnowYourGenetics is from Yasko, right? I remember looking at that, trying to figure out if I should try it for DD, entering my own genetics to see and then being turned off because she was recommending I buy like 100 supplements (and I'm neurotypical!), and it all felt like a marketing scam. (Not that I distrust her interpretation of the SNP's, but there's no way I'd give these unknowns to an 8 year old...) I'll enter the SNPs to see what it gives me for DD, though.

The free vid was just for Moro: https://www.youtube.com/c/starfish4anxiety If that works, she recommended this, which looks like it addresses all the reflexes: http://www.pyramidofpotential.com/maintaining-brains/

[PeterPan]

I like the KYG report because it kicks out a handy, colorful chart that puts some of the most important data together in a convenient way. Ignore all the rest. She's listing 15 things in each category and you don't need to do any of them and certainly wouldn't do all of them. Just look at the data chart, kwim?

[nature girl]

I entered all the COMT and MTHFR, just to see...She came up RED for COMT, yellow for MTHFR. Which...makes sense. So does this mean she's MTHFR homozygous? COMT is a dingdingdingding!

But what to do about it? I mean, medicating, I guess. ?

"COMT (catechol-O-methyltransferase): A primary function of this gene is to help to break down dopamine. Dopamine is a neurotransmitter that is recognized for its role in attention, language, as well as reward seeking behavior. Dopamine helps to cause pleasurable feelings that aid in reinforcing positive behaviors and motivating individuals to function in certain reward gaining activities. COMT is also involved in the breakdown of another neurotransmitter, norepinephrine. The balance between norepinephrine levels and dopamine levels has been implicated in ADD/ADHD; in addition, dopamine levels are important in conditions such as Parkinson’s disease. COMT is also involved in the proper processing of estrogen in the body. Sensitivity to pain has recently been found to be correlated with COMT activity, such that COMT + + individuals may be more sensitive to pain. Methyl B12 may be tolerated better by those with results of - - as compared to those who are ++ or +-."

[PeterPan]

You shouldn't have had to enter anything manually. You should have been able to upload directly from 23andme. 

Yasko lists V158M, H62H, and 61 for COMT. Are you saying she was red for all three?? Wow. How was her VDR? And the MTHFR, same gig, there are several (C677T and A1298C). 

What you're going to find, as you dig in, is that some of this stuff is contradictory. Like the MTHFR means she's undermethylating. Technically she's an undermethylator and needs methyls. BUT the COMT and VDR can affect how well she tolerates methyls. So you get the methyls too high, and boom you get symptoms from that. So the person in that situation is trying to balance, raising one thing, making sure it doesn't go too high. The person I know like this is really tricky. You end up needing to run labs to see if she *needs* more b vitamins, then you judge very carefully how to introduce them.

What was the VDR? And the TPH2 from the PureGenomics list? 

Yasko gives a little chart suggesting which forms of B12 you use depending on your VDR and COMT status. It's really all about the methyls though. It's interesting that she's tolerating a methyl-donor stimulant med as well as she is. Has she had any incidents of aggression with it? With her mix, it really will just be specific to her, how things are balancing in her mix.

[nature girl]

9 minutes ago, PeterPan said:

You shouldn't have had to enter anything manually. You should have been able to upload directly from 23andme. 

Yasko lists V158M, H62H, and 61 for COMT. Are you saying she was red for all three?? Wow. How was her VDR? And the MTHFR, same gig, there are several (C677T and A1298C). 

What you're going to find, as you dig in, is that some of this stuff is contradictory. Like the MTHFR means she's undermethylating. Technically she's an undermethylator and needs methyls. BUT the COMT and VDR can affect how well she tolerates methyls. So you get the methyls too high, and boom you get symptoms from that. So the person in that situation is trying to balance, raising one thing, making sure it doesn't go too high. The person I know like this is really tricky. You end up needing to run labs to see if she *needs* more b vitamins, then you judge very carefully how to introduce them.

What was the VDR? And the TPH2 from the PureGenomics list? 

Yasko gives a little chart suggesting which forms of B12 you use depending on your VDR and COMT status. It's really all about the methyls though. It's interesting that she's tolerating a methyl-donor stimulant med as well as she is. Has she had any incidents of aggression with it? With her mix, it really will just be specific to her, how things are balancing in her mix.

 

How were you able to download directly? I saw a link for 23andMe, but when I downloaded the raw data it was in a pdf file, which the site didn't accept?

She was Red for 2, and Green for 1...MTHFR was Yellow for both SNPs that 23andMe included. I haven't looked at anything else, but will do that. I was trying to figure out PureGenomics, but it looks like you need a Practitioner to sign up for you?

She's had no aggression on the meds, she handles them wonderfully, it gets rid of almost all her impulsivity. 

Thanks so much for all your help!! This really is fascinating...

[nature girl]

I only could get one of the VDR SNPs...Also red.

[PeterPan]

You already did this? https://www.knowyourgenetics.com/media/pdf/23andMe-Upload-Howto.pdf  It just worked for me when I did it with the three people I've done, sorry. Download the raw data from 23andme, save to your computer, link and upload, boom.

[PeterPan]

And what would you say you're trying to make happen? With that VDR, she should be on vitamin D. Would your doc run labs for you? If insurance will cover it (ie. it's free to you), I'd get labs done. You had a sort of crunchy doc, right? So you'd like D, the B vitamins (usually it's part of a larger, basic panel), homocysteine, etc. That way if you decide to do anything you ahve a baseline first. Like if she doesn't need D, don't go giving her D. But with those genes, she might need D. So if you can get labs on the cheap, might be helpful.

[PeterPan]

Rs 4570625  That's the TPH2 from the PureGenomics list. See how that is on her. You can search manually on 23andme.

So where it gets interesting is if she's defective on the TPH2 and you're wanting to up her 5HTP. It can help anxiety and smooth things out, but the MTHFR defects are so significant that you have to get her methyl levels up enough to tolerate adding the 5HTP. 

[nature girl]

2 minutes ago, PeterPan said:

You already did this? https://www.knowyourgenetics.com/media/pdf/23andMe-Upload-Howto.pdf  It just worked for me when I did it with the three people I've done, sorry. Download the raw data from 23andme, save to your computer, link and upload, boom.

 

I did download the data, but it came as a pdf, not a zip file like your link is showing...

I guess I should get blood testing...She spends a ton of time outside, so I'm guessing her D is okay, but it's worth checking. It sounded like you were implying VDR is related to MTHFR?

[nature girl]

1 minute ago, PeterPan said:

Rs 4570625  That's the TPH2 from the PureGenomics list. See how that is on her. You can search manually on 23andme.

 

She's G;G

[PeterPan]

VDR is the vitamin D receptor gene. I'm tired here (bronchitis, sigh), but you did say she was homozygous defective for the VDR, yes? So then google it but that's like 70% bunk on converting sunlight to D. Ie. she'd benefit from supplementing and notice a difference.

5 minutes ago, nature girl said:

 

She's G;G

So there you go. She's homozygous for the defect. That means her tryptophan is not converting well to 5HTP. If she's having symptoms of anxiety or insomnia, that can be why. But 5HTP slurps up methyls in that process of forming serotonin and melatonin, meaning you go putting her on it and her undermethylation status is going to bite her. 

Fun stuff, eh? So you have explanations, but the actual doing with it is tricky. 

[nature girl]

5 minutes ago, PeterPan said:

VDR is the vitamin D receptor gene. I'm tired here (bronchitis, sigh), but you did say she was homozygous defective for the VDR, yes? So then google it but that's like 70% bunk on converting sunlight to D. Ie. she'd benefit from supplementing and notice a difference.

So there you go. She's homozygous for the defect. That means her tryptophan is not converting well to 5HTP. If she's having symptoms of anxiety or insomnia, that can be why. But 5HTP slurps up methyls in that process of forming serotonin and melatonin, meaning you go putting her on it and her undermethylation status is going to bite her. 

Fun stuff, eh? So you have explanations, but the actual doing with it is tricky. 

 

You should become a MAPS doctor... ?

Good info, but yeah, not sure whether it's worth making the modifications, at least not for anxiety, since that's such a minor issue for her. Like, she's a little scared of monsters, and the idea of tornadoes worries her, but she can easily be distracted from it. It's not debilitating in any way. I'd say it used to be a little more of an issue? Like as a little kid she'd seem stressed out if we didn't do her bedtime routine, or a toy fell out of sight under the couch. But there's nothing like that now...

ETA: And insomnia isn't an issue at all.

[PeterPan]

The methyl folate and B12 issues are worth working on, because they're connected to emotional stuff. I don't know your dd, but I've just always taken it you were seeing things that you couldn't quite put your finger on that concerned you. Well if you dig in on those vits, they're probably underlying part of it. The changes might be subtle but good.

[PeterPan]

Well obviously you're going to prioritize. How old is she? Anything that you're sort of skating by may come to a head with puberty. You haven't had hormones yet to destabilize things. 

[nature girl]

Just now, PeterPan said:

The methyl folate and B12 issues are worth working on, because they're connected to emotional stuff. I don't know your dd, but I've just always taken it you were seeing things that you couldn't quite put your finger on that concerned you. Well if you dig in on those vits, they're probably underlying part of it. The changes might be subtle but good.

 

Yup, emotional regulation is probably her biggest issue. I had her on a good B-complex a couple of years ago, but really didn't see any difference in behavior. Guess it's worth getting her tested, though.

[PeterPan]

Well these results would explain why she didn't improve on the b complex. And yes, she'd probably be a bit more even keel if you got up these b vitamins, the D, and the 5HTP. But the issue is that all those things are going to drop her methyl levels. Some blood work would tell you which things to target, and then you could just work with it and see whether she needs the methyl forms or whether she gets irritable on the methyl forms and should just have regular forms. 

Yeah, it's tricky because she's so young. My dd is doing this now and she's able to tell me how she feels. I'm able to see the change and we're working on jiggling things up. But your dd is young enough it's harder for her to tell you, sigh. That's why I was suggesting labs. 

[PeterPan]

When you say emotional regulation is her biggest issue, what do you mean? What is going on? 

Not like I'm wanting to violate your privacy or something. I'm just saying, at some point you have to put words to it, figure out which of these things (or combination) explains it, baseline it, and track progress. My ds is aggressive, but he also has significant language deficits. Your dd might be feeling the same things but maybe have more tools for coping because she's got a lot more language. But those are some pretty wow genes, just saying. To me, my eyebrows are way up. Like her little body is doing a lot to her and she's working really hard to cope and stay calm, kwim? 

[nature girl]

1 minute ago, PeterPan said:

When you say emotional regulation is her biggest issue, what do you mean? What is going on? 

 

She gets upset with me and my husband (mostly my husband) VERY easily, when things don't go her way. Recently there's been some aggression too...not major, but some hitting that seemed to come out of the blue as a result of frustration. The other day I asked her to explain a math problem and she got FURIOUS at me, yelling and then crying, and it was really hard to calm her. (She understood the problem completely, just didn't want to explain.) This was an issue with hs'ing too, if she couldn't find an answer. She just explodes really easily into frustration and anger.

[PeterPan]

Well look at the genes. I know someone who is homozygous for those COMT genes plus MTHFR defects. They tolerate *some* methyls, but you get the methyls too high and that person, who is a verbal adult btw, a person of sound mind and good character, is ASTONISHINGLY aggressive. So that would be a logical place to look. 

If you can get some labs and see how much D is warranted, that would be an easy place to start. D will take down the methyl levels a fuzz, is probably necessary for her, and it's something you can track and tell with labs when you've hit a good amount for her. I'm giving my ds 4,000 IU a day, plus he gets D in his calcium/magnesium supplement. 

Then if the methyl levels are still high (which you could politely assume based on the behaviors) then you have room to go ahead and start some 5HTP. That's going to drop her methyl levels even more. Natrol makes a time-release version. It's warranted by her genes, and it would just be a smooth, even effect, tidy. You could see where that gets you. 

I don't think the B vitamins being low causes the aggression. I'm guessing that's the methyls being too high. If you want to see, just give her some niacin and see what happens. Kal makes a 25mg niacin lozenge, or you can buy Phillips brand fiber gummies labeled "Good Energy" that have 10mg of niacin per gummy. If you give her the niacin (try 20mg) and she calms down, boom, you have your explanation.

Her genes are contradictory. She may have seemed better at first on the meds because her methyl levels were so low. Now the COMT is biting you, making her not tolerate the methyls being high and not used. So you start taking them down with niacin (just as a test) then with D and 5HTP. Maybe you'll be able to find a way to keep everything balanced and keep the meds. I don't know.

I don't that anyone really really has this stuff figured out yet. They're trying. Like if you find a doctor that has a clue that would be amazing. I think the idea is right but it's not super commonly known what to DO with it. It will be in 20 or 40 years, but that doesn't help us NOW, lol. But that's how I play with it and that's how it seems to be rolling with the people I talk with/help. I'm a nothing and am not qualified for anything, so I'm just saying what I do and what has happened with the people I've got data on.

[PeterPan]

Niacin ActivMelt (25 mg Strawberry) Kal 200 Lozenge

This is what I give my ds. Half life is 20-40 minutes for niacin, so we're not talking a huge deal. You can literally just give her a dose this low and see what happens, see if it tamps down the irritability.

I'm linking it because I want to be precise. I'm NOT using a no-flush and I'm NOT using high doses.

What you're describing is how my ds was all the time when his methyls were too high. However he doesn't have the verbal to yell and cry, so he just goes physical. Sigh. 

[nature girl]

Maybe worth a try? But we're not seeing the issue anywhere near as much when meds are in her system, only after they've worn off and on weekends when we don't medicate. How often do you do the niacin? If the half-life is that short, I'm not sure how much good it will do us. With DD, it's so short-lived, she's doing really well, in a great mood, then suddenly BAM. And then, 5 minutes later, it's over and she's her happy little self, with almost no memory of what just happened.

[nature girl]

1 hour ago, PeterPan said:

Well these results would explain why she didn't improve on the b complex. And yes, she'd probably be a bit more even keel if you got up these b vitamins, the D, and the 5HTP. But the issue is that all those things are going to drop her methyl levels. Some blood work would tell you which things to target, and then you could just work with it and see whether she needs the methyl forms or whether she gets irritable on the methyl forms and should just have regular forms. 

Yeah, it's tricky because she's so young. My dd is doing this now and she's able to tell me how she feels. I'm able to see the change and we're working on jiggling things up. But your dd is young enough it's harder for her to tell you, sigh. That's why I was suggesting labs. 

 

So I'm trying to interpret everything you've written...She has a med check with her ped in July, so I'll ask for a script for blood work then...You're saying to test for D and Bs. (Just B12?) If D is low then supplement, it'll decrease her methyl levels. If behavior is still an issue, she probably needs methyl levels decreased further, so supplement with methyl Bs? This is fascinating, but also a little scary...I'm worried about overreacting and making things worse.

[PeterPan]

That's a long time to wait. You might as well just start some stuff and then test levels for progress.

[PeterPan]

The D and 5HTP will stay in her system longer, evening out her symptoms. The niacin has a super short half-life. And yes, it would be worth intervening on. The D should be a pretty innocuous place to start.