Neurotypical kids bad primitive reflexes, anyone else?

[drjuliadc]

I have one child, my youngest boy, who used to have too many tantrums and used to bang his head when frustrated.  I got an ILS system for him and am working with a therapist online using it.  I pay per month for 1 or however many kids use it so I use it with all four of my kids.

She is getting us to do primitive reflex integration also.  I already knew how to do it, but it is helpful to get someone to keep us accountable.  I hadn't done much of it with my kids in spite of knowing how.  Now that I am doing it, I am shocked how bad my NT kids are at duck and pigeon walk.

Do any of you with neurotypical kids have them do duck and pigeon walk along with your challenging kiddos? Are they pretty bad at it too?

On another note, I used to read about it and think it sounded like a no brainer to do ILS with a kid with issues. Now that I have done it, the results have been very good, but slow enough that it would be easy to get discouraged in the hustle and bustle of busy parenting and not even notice the gradual improvements.

My oldest (very observant) son had to point out to me that he stopped putting things in his mouth.  That was a few months into it and a few months past when he stopped doing it and I didn't even notice.  It bothered me so much when he did it before that is surprised me that I didn't notice.

[PeterPan]

Why the focus on whether they're NT? Seems immaterial and possibly misleading. They have retained reflexes and those usually have consequences. Yes, if one sibling has issues usually others do to some degree, unless it was some kind of de novo mutation driving it.

Yes, there's a retained reflex that causes the mouthing. Several of the reflexes are for rooting, nursing, feeding type behaviors and when they don't get integrated (not from lack of nurse but from just the weird way these things cascade), it has consequences. You can try brushing the side of his face too. Palms of the hands also. 

We did some kind of listening therapy when ds was young. It was minorly helpful. I think the bigger package stuff they're leading you to is important.  Are you getting evals for the one who was head banging? That's pretty serious. Are the APD and academic issues of all the kids in order? Sometimes these issues cascade out with kind of funky processing holes. So they have issues but it's never enough to get any one wow label. It's why the whole "NT" thing is a crock, because it's not as b&w as that. You can have issues and not get a label and some sibling pushes further and gets a label. Doesn't mean the dc experiencing the processing challenges doesn't have challenges in their own right, only that the DSM is incompetent and imperfect at explaining what is going on.

That's really smart to do therapies with EVERYONE.

29 minutes ago, drjuliadc said:

Do any of you with neurotypical kids have them do duck and pigeon walk along with your challenging kiddos? Are they pretty bad at it too?

Neither of my kids had those particular reflex issues, not even my super challenging ASD2 kid. That's moro and pretty early, right? You want to keep tabs on everything (vision development, auditory processing development, etc.) because that can make for a cascade. 

[PeterPan]

32 minutes ago, drjuliadc said:

used to bang his head when frustrated.

Has he had an SLP eval? It's just a cover your butt question, but I'm still asking. 

[Lecka]

All my kids passed those screenings with the pediatrician.  Two had a lot of OT and retained reflexes mentioned.  But the two of them were different from each other.  

[kbutton]

2 hours ago, PeterPan said:

Why the focus on whether they're NT? Seems immaterial and possibly misleading. They have retained reflexes and those usually have consequences. Yes, if one sibling has issues usually others do to some degree, unless it was some kind of de novo mutation driving it.

I think the bigger package stuff they're leading you to is important.

I agree. Neurotypical is relative. That said, it could be that they don't have challenges that they can't compensate for. Watching to see how much that compensation costs them is important as you don't want them to hit a point where they are struggling suddenly and don't have tools that would work better if they'd had them earlier. Some things are just more organic if they get the therapy earlier, KWIM?

Also, the retained reflexes can be detached from cognition, sort of. For instance, kids with connective tissue disorders can struggle to integrate reflexes, and that's physical, but a lot of people whose kids have CTDs will tell you that it does effect how they interact with the world and take in information. It just does. If CTDs are suspected or in the mix, you need a firm diagnosis as some of the CTDs have serious health consequences, including aneurysms and blood vessel ruptures. You'll want to see a geneticist. If you are concerned about CTDs, I can give you a bit of a primer on the common ones and which ones are concerning.

Any way you slice it, it's definitely a good idea to keep working on reflexes with all of them until they are doing well.

Yes, duck/pigeon for Moro is really, really basic. If Moro is a mess, the rest will not likely develop, though you can improve Moro and start working on others. It doesn't have to be perfect to work on the others. 

And yes, watch for what any particular company is selling. You can always see what they have on the line next and run it by people here to see what they've used. We're past the point where we "need" a "system" because there are lots of materials available now; at the same time, there are some great resources that can save you from researching things to death too!

3 hours ago, Lecka said:

Two had a lot of OT and retained reflexes mentioned.  But the two of them were different from each other.  

It's important to realize that they might all need something a little different from one another even if they have some of the same underlying things going on.

[drjuliadc]

You all brought up helpful and interesting points so I am glad I asked. 

I just needed a word to call kids who seem really normal. I just picked NT.  It surprised me that kids who seemed like they were doing well had issues. I wondered if anyone else had experienced that.

I saw some small things like the mouthing, but he was adopted from foster care and there were drugs involved so I expected something. That’s about all I noticed with him. The mouthing was kind of bad though. He is the oldest, and the best on the duck/pigeon. I was not expecting that.

My challenging one, who also seems the most gifted, has a twin and she seemed like she had no problems. Maybe she was just too young to see it. They just turned 6 and she still wets the bed but she is the deepest sleeper on the planet and she refuses to go to the potty before bed. If she pees before bed she doesn’t usually wet it.

Something just started to show in her last school year. She is a very, very good reader, loves to read, reads independently and chooses to read a lot, but has really poor phonemic awareness.  I taught her to read so young I just thought I needed to go over phonics again at the age that you normally teach reading.

I am glad you brought up APD because I will be more aware of that, especially If it just isn’t sticking once we hit phonics hard again. I taught reading so young because I was poised for someone to be dyslexic. I wanted time to fix it if I found it. She is the one who probably would have been dyslexic, but I am just realizing that lately. I have always been so happy I taught them the way I did, so she feels ahead instead of behind.

They are all academically doing very well. The two in the upper range of gifted hate school but I think they are bored. The youngest doesn’t have writing stamina but I had to put him in K or 1st and I chose first even though technically he should be in K. The twins were born 3 weeks early and wouldn’t have made the age cutoff for 1st if they had been born on time. Boy twin is so far ahead in everything else other than writing. I just thought it was normal for his age and being a boy to lag in writing.

I agree that the reflexes all need to be handled. I am really happy with this therapist. I think it is really cheap. It is basically just buying an ILS on a monthly payment plan and the therapist for all 4 kids is included. It is a system and I think it is a good one.

They start with that “famous” guy’s, who’s name escapes me now, “safe and sound protocol” before the standard ILS and reflex work. That is probably the part that helped my oldest’s mouthing.

I was super impressed with him and so are people who I follow. I am actually very good at knowing a good thing when I see it. 

There is some very high level info right on this board and I am smart enough to have found YOU all.  Haha. Some of the most “go to any length” moms are here. You guys are intelligent and you are looking. And guess who finds stuff? Those who are looking. You guys are really looking hard and I know it.

It always shocks me how many people aren’t even looking.

I hadn’t considered a CTD because I hadn’t really associated it with reflex problems, so that is good you made me aware of a connection. “Challenging kid” has some hyper mobility that I was aware of early on, but he is the one with all the “stuff.” I still don’t think there is a diagnosis he would fit even if someone was looking really hard.

Maybe some of the stuff that would fit a diagnosis would reveal itself later? I’ve got two who just turned 6, one who just turned 9 and a 10 year old. They were three very easy babies and children except youngest twin. All 4 very easy to teach academic things.

 

Edited October 21, 2021 by drjuliadc
Grammar

[drjuliadc]

Stephen Porges is the “Safe and Sound Protocol” guy. It is supposedly to balance sympathetic and parasympathetic.

Brain Harmony is the therapy place. You pay about $250 a month and the whole family can be evaluated by questionnaire, do the safe and sound protocol, get schedule recommendations and adjustments for the ILS and get evaluated for primitive reflexes by teleconference. Once you have done it long enough to have paid for the ILS, it is yours. Calls are weekly or every other week. Weekly didn’t seem necessary so we do once per two or three weeks.

[kbutton]

On 10/20/2021 at 9:24 PM, drjuliadc said:

I hadn’t considered a CTD because I hadn’t really associated it with reflex problems, so that is good you made me aware of a connection. “Challenging kid” has some hyper mobility that I was aware of early on, but he is the one with all the “stuff.” I still don’t think there is a diagnosis he would fit even if someone was looking really hard.

A cognitive diagnosis, or a CTD diagnosis? 

If he has characteristics of CTD, I would look at a few sites and keep the information on the back burner. He could manifest more characteristics over time. My son with a CTD pings far more checklist items now at 13 than he did at 6 or even 9. 

https://marfan.org/dx/score/

https://marfan.org/conditions/  (this is related conditions, including some CTDs)

https://www.ehlers-danlos.com/what-is-eds/

The pattern of the hypermobility can sometimes point a particular direction--EDS tends to have more clear patterns, while other CTDs can sometimes have a combination of hypermobility in some joints offset by limited range of motion in other joints.

You really want to rule out insidious concerns like aortic aneurysms and vascular fragility if you suspect CTD. Those are the more rare types, but they are common enough.

 

[drjuliadc]

I was thinking cognitive diagnosis. Heck, no one seems to be able to get a CTD (connective tissue disorder) diagnosis. 

In my chiropractic practice people who probably have a CTD have a terrible time getting diagnosed. One patient was sent to Duke and they determined she had a CTD, but couldn’t tell her which one. No one locally could diagnose it and we are in a 1,000,000 population area.

One of the most obvious EDS (Ehlers Danlos) cases I know took 20 years to get diagnosed. She wasn’t a patient though, an acquaintance.

I have another patient who surely has a CTD. I will emphasize to her and her husband there are other problems besides musculoskeletal, although it isn’t like she would get help locally anyway. She is young and has already had neck and low back surgery for stenosis.  We VERY rarely have a patient need surgery who follows through with chiropractic care and she has.

I am surreptitiously getting other kids (neighbors, patients kids) to duck/pigeon walk and they aren’t bad, but not that great either.   No one’s is perfect yet. Just confirms my thinking that treating brain injury is a growth industry.

My challenging kid’s duck/pigeon is WAY better after doing it for two weeks. He really couldn’t do it at all at first. We are supposed to be doing it 4 times per day. Maybe we do it twice.

Side note: one patient with EDS is allergic to gelatin capsules and another acquaintance with EDS went plant based and felt a lot better. I think these two things are big clues. Perhaps eating animal proteins are stimulating an auto immune attack on connective tissues.

[PeterPan]

4 hours ago, drjuliadc said:

My challenging kid’s duck/pigeon is WAY better after doing it for two weeks. He really couldn’t do it at all at first. We are supposed to be doing it 4 times per day. Maybe we do it twice.

I'm glad you're seeing progress!!! The main thing they told us, when we were finally successful with retained reflexes, was never miss a day. So if you're hitting 2X, that's awesome. And it was something like at least 40 or 45 days of that consistency. 

 

[kbutton]

22 hours ago, drjuliadc said:

In my chiropractic practice people who probably have a CTD have a terrible time getting diagnosed. One patient was sent to Duke and they determined she had a CTD, but couldn’t tell her which one. No one locally could diagnose it and we are in a 1,000,000 population area.

One of the most obvious EDS (Ehlers Danlos) cases I know took 20 years to get diagnosed. She wasn’t a patient though, an acquaintance.

This is changing a great deal, but genetic clinics are usually more than a year wait. Until the last 2-3 years, some of these diseases had to be parsed out via clinical presentation, and now they use that to screen for who needs genetic testing. The testing is definitive for nearly all cases of EDS at this point. 

22 hours ago, drjuliadc said:

Side note: one patient with EDS is allergic to gelatin capsules and another acquaintance with EDS went plant based and felt a lot better. I think these two things are big clues. Perhaps eating animal proteins are stimulating an auto immune attack on connective tissues.

I think this is a rabbit trail that is not useful. It's insinuating that someone can avoid having EDS or another CTD. 

EDS and some of the other CTDs definitely have associations with allergies/allergic type conditions (MCAS, etc.), learning issues, and dysautonomic conditions, but not all are. The more they figure out the genetic stuff, the more they can pinpoint the extent and cause of these associated conditions. There are diets that can exacerbate existing inflammation, but they don't prevent EDS or other CTDs.

We are a medical family and do believe that certain things can switch some kinds of genes on or off, but many/most CTDs are not epigenetic, they are at a whole body level with different DNA blueprints for how to make collagen (or other connective tissue, depending on disease). Marfan Syndrome causes the body to build fibrillin incorrectly, for example. It doesn't make normal fibrillin up until someone starts smoking, or eats beef. It never makes normal fibrillin to begin with. The recipe is faulty, and it's not an epigenetic switch. Can you do things that make that worse? Yes. Can you prevent the manifestation of disease by eating a special, perfect diet? Nope. Can healthy behaviors exacerbate Marfan Syndrome as well? YES!!! 

Same for EDS. 

ETA: It's more likely that whatever makes them have EDS is more likely to make them have allergies, etc., or quite possibly EDS IS quite possibly the epigenetic switch to make them have those things. 

Chronic Pain Partners has a lot of information about conditions associated with EDS. 

Edited October 24, 2021 by kbutton

[drjuliadc]

I appreciate your insights especially since CTDs are a special interest of mine and I still have a lot to learn. I was unaware that diagnosis is improving.

The patient who was diagnosed generally with a CTD, but not specifically, was diagnosed more than 2-3 years ago. There might be more specific help for her. Also, her mother has fibromyalgia and I read that some people think that there is some CTD relationship with FMS. If diagnosis is improving, it may become more clear what the FMS/CTD relationship is.  You might have some input on that.

I wasn’t even slightly insinuating that eating a different way could make someone have not have a CTD. I do think it is important to notice things that consistently make people with one diagnosis feel better. 

I am not even a proponent of eating plant based in general. I just know that those two observations (the plant based acquaintance and the “allergic” to gelatin patient) are significant to some extent. The EDS acquaintance who went plant based improved so much that she no longer required her service dog for assistance. She still has EDS.

Obviously the diet relationship is more clearly established with celiac than it is with CTDs. My husband’s grandmother had celiac sprue. Not eating gluten is not going to change his genetics. Not eating gluten has allowed him and his mother to live a much more normal life.

If I were really smart, I would figure out a way to not be sensitive to foods rather than have to avoid them.

[drjuliadc]

On 10/23/2021 at 10:01 PM, PeterPan said:

I'm glad you're seeing progress!!! The main thing they told us, when we were finally successful with retained reflexes, was never miss a day. So if you're hitting 2X, that's awesome. And it was something like at least 40 or 45 days of that consistency. 

 

This is helpful too. My nanny is much more consistent doing all the things so we miss on weekends more than not. It is good to know different therapist’s views and protocols. Ours was duck/ pigeon 12 feet forward and back 4 times per day for 14 days.