Gifted Issues Discussion homepage Forums Twice Exceptional retained reflexes v. dyslexia, CAPD, ADHD...

Chicken or egg?

My eldest DD, 9yrs old, is mildly, or perhaps moderately gifted, with diagnosed retained reflexes, sensory issues, CAPD and as yet undiagnosed dyslexia and inattentive ADHD.

I have known about DDs retained reflexes for 2 years but I had not really understood the possible import of them until, well, today.

I am wondering what more experienced members thoughts are with regard to the significance of retained MORO, ATNR and STNR reflexes (the report does not say whether they are mildly or strongly present). The OT report noting these doesn't mention much more than that they are retained, indicating nervous system immaturity. There was so much else in the report that we thought "well that explains why she wouldn't sleep" and then we focused on other things... There was plenty to focus on and I had hypermisis at the time..

But a bit of googling today reveals multiple different sources all suggesting these reflexes when retained create a picture that looks just like my DD. I am just wondering why though, if that is the case, more wasn't made of them at the time? And why didn't the neuro psych we saw today know anything about retained reflexes (and he was otherwise very up on every other issue I raised)? What is the likelihood of fully integrating these reflexes and what is the likelihood of that appreciably reducing dyslexia/CAPD/ADHD type issues? Are retained reflexes really causal or are they co-morbid?


We are currently considering a course of neurotherapy for DD and I am wondering do we try to re-mediate the reflexes first, if so how, or do we consider that the neurotherapy may help integrate the reflexes?

I have often wondered about this myself, especially after hearing dire warning that 'crawling is a developmentally necessary stage!!!!'

I have no reason to think that my intuition is correct, but since you asked -
I think it's comorbid in all, and causative in some!

I think you have to try a few different things and see what works for your kid (sorry!) I've been curious about:

But we went the Occupational Therapy route and saw lots of improvement over time....I don't think DS had retained reflexes, just generally floppiness, and to aware of possible dangers for his own good.

Best Wishes,
Grinity

MumofThree,

Who does "neurotherapy"?

If an organization claims to offer fixes for a large number of disorders (ADHD and retained reflexes and autism and processing disorders and and and), usually they are selling snake oil. If there was an easy fix for these things, the neurologist would have told you so. There are lots of these outfits out there now.

I think skepticism about what's on offer is in your DD's best interest.

DeeDee

Thanks Grinity!


Mmm, yes well I had heard this prior to my DD not crawling. And yet I still, oh so naively, told myself "It's not that she can't, it's just that she doesn't want to because she doesn't like hitting her head! That, and she likes to see where she is going and to be able to carry with her hands while she moves." All of which was true. But retrospectively I know she has trouble crossing the midline, so either she couldn't cross crawl or her failure to do so has caused problems down the track.

So when my youngest started "crawling" with a symmetrical drag that looked more like a sea lion heading for water than a baby crossing the floor I had her into OT quick smart. We saw the OT at 6 months and he agreed with me that she was days from getting up and walking, but I got her cross crawling within that week and then she crawled for over 6 months. She was very, VERY like my eldest but now I think their developmental paths are diverging. In a good way. And at least in part because of the crawling.

A Neuropsychologist provides neurotherapy. They aren't claiming to cure all things! I think something must have come out wrong in my post there. The neurotherapy we would be considering for ADHD. I am wondering if we should separately be trying to address the retained reflexes first, and how likely that is to be effective.

We are considering trying the Cellfield program for the dyslexia, but not until after various other things and only if it still seems necessary...

So yeah, no one stop shop easy fix.

DS did crawl eventually, for a bit, but crossing the midline was an issue later in OT/PT. He was on the swim team for 2 years and I saw a big boost in general coordination after that. Lots of crossing the midline while swimming!

Make sure that you get an audiology exam. The hearing screening at the pediatrician's is inadequate to pick up many hearing losses. Hearing loss causes ADD/ADHD (or contributes to it) and CAPD.

Grinity - She's going back to the OT tomorrow for a re-evaluation. So it will be interesting to see what a big improvement in her swimming and piano have done for her.

Jack's mum - thanks for that suggestion, her hearing is abnormally good, particularly in the lower register, and was last checked a month ago by the audiologist who diagnosed the CAPD. The auditory OT, who picked up the extent of what she could hear in the lower register, suggested that hearing so much more low noise than other people might be contributing to her inability to distinguish what she is actually supposed to listen to.

Good luck tomorrow.
Also got me thinking about depth perception. DS's was 'slow to develop' I'm not sure if this is normal, but when he was little I would try to 'play catch' with a koosh or other specially designed ball. It would always end with me throwing it and smacking him in the middle of the forehead. Is that normal in a toddler? If I had known then what I know now, I wouldn't have given up, but it was so discouraging!

Later, DS got 'interested' in a schoolyard game called 'wall ball' which involved pink balls, and well, a wall. He basically cured himself of his late to mature low depth perception in one year of intense play.

Good luck,
Grinity

My younger child (3y4m) was diagnosed with retained reflexes at one point. He also has benign hypotonia that has improved greatly, but is still present. He was also diagnosed with failure to thrive as an infant, with very low oral motor tone that contributed to nursing issues. He actually still has head lag, something that should disappear in infancy.

They were really freaked about him when he was tiny--we had an MRI, tests for muscular dystrophy, CP was considered...but he seems to be fine now. In fact, he appears far more neurotypical than his sister, who has looked SPD-ish, ASD-ish, and ADHD-ish in her time, and has met all his milestones and then some despite a slow start (didn't sit alone till 9 months or crawl till 11 months; we had him in PT till age 1ish).

I don't know what the deal is with these odd signs of his and I suspect we never will, though there is a family history of "floppiness." I do notice that there seems to be a strangely high # of gifted kids with hypotonia.

I forgot to mention that DD also has low tone, as do I. I actually have either one of the milder forms of ehlers danlos, or benign hyper-mobility syndrome, which she has likely inherited. Well we have the OT this afternoon, it's been 18 months since our last visit, so it will be interesting.

Well, everything where she was below average is now above average, crossing the midline in particular was very good today. All but one of her retained reflexes have been integrated, the remaining one is only mild. In the OTs opinion there is no longer any sign of a visual based learning delay. The low tone and ligament laxity is there to stay but not effecting her, the only real issue being at higher risk of trauma injury to joints.

Which is all awesome news. And presumably means any other issues (dyslexia, CAPD, ADD, etc) are not currently effected by retained reflexes.

Did they give you any concrete advice on how to avoid this? I have read that this is a risk (both my kids are low tone and have the ligament laxity, though DS is worse) but don't know more than that.

Well, the OT and I only discussed this briefly because I already felt pretty clear on what (not) to do - don't work to increase the laxity and avoid sports with high speed direction changes and other activities that put joints at risk.

If they do dance, gymnastics, circus, or similar don't allow them to push their already flexible joints to new heights - because chances are when they are no longer as fit and strong they will still have the extra flexiblity/fragility in their joints that they worked to get. And perhaps avoid the sports that often lead to knee, ankle or elbow injuries - netball, soccer, tennis all come to mind. Netball is particularly harsh on knees and ankles so I am very happy that my DD does not enjoy it and I will not encourage her to persist.

I agree! Yippee!
Nice to get good news,
Grinity

I am reviving an old thread because of similar issues. DS5 has had ten months of OT for sensory integration, postural stability, handwriting, bilateral coordination and reflex integration. There has been improvement in all areas, however, the reflexes are still not integrated.

Thoughts?

A laypersons observations of him would he a kid who has an awkward running style, weak muscles, can't pedal anything, can't catch or throw well, has trouble with buttons, zippers, etc., is a sloppy eater who uses his hands too much and tends to drop stuff a lot.

This was my DS at 5 - add to it that he fell down a lot. He was clumsy, clumsy, clumsy. He also engaged in sensory seeking behaviours, like running and purposefully landing - cringe - on his knees (you could tell the difference between this behaviour and accidental falling). There was seeking in all sensory areas - I could write a novel-length list.

Anyway. His diagnoses are ADHD, Language processing disorder, and a piece of CAPD (binaural integration imbalance).

At 8 he's like a different kid. He's still not phenomenally athletic (can't seem to learn how to swim), but physically he's become very, very typical.

We've never done OT, but we have done skating, swimming and gymnastics. Plus we walk a lot, and at one point had a paper route. I read and read as much as I could about sensory/motor issues and came to the conclusion that the brain needs to be exposed to movement in order to learn how to modulate it... so I just kept DS active. Exposure, exposure.

Eventually his gross and fine motor weaknesses issues improved to the point where you can't pick him out of the typical kids in this regard (although I'm sure the jock kids can still leave him in the dust, lol). He learned to ride a bike at 6, he can skate quite well (level 4 in Canskate), he rides a scooter well, his printing looks like that of all the typical boys in his class, he can eat without spilling, etc etc. The last three years have been fantastic as far as his development is concerned.

(there's always hope ...just keep at it)

[quote=KJP]
A laypersons observations of him would he a kid who has an awkward running style, weak muscles, can't pedal anything, can't catch or throw well, has trouble with buttons, zippers, etc., is a sloppy eater who uses his hands too much and tends to drop stuff a lot. [/quote

I'm guessing there could be 1000+ explanations for this, but fwiw, most of this would describe my ds at 8 years old, and still today at 13. Dropping things isn't really an issue with him and he's not a sloppy eater, but the rest totally fits. He has learned to button and zipper but it was a sloooooowwww path to get it down and he's still very slow in his movements. In his case, these symptoms are due to developmental coordination disorder (dyspraxia). He did learn how to pedal when he was around 8 years old, and he actually enjoys riding his bike, but I know of other kids with DCD who have trouble learning to pedal.

Anyway, my thought is - it took us a neuropsych eval in 2nd grade to sort out what was up with ds. He had symptoms that an OT could have evaluated, that an SLP could have evaluated etc... but a neurospych looks at how everything interacts and fits in together and that's how we came up with a set of diagnoses that made sense for our ds.

polarbear

CCN, I am glad to hear your son has had a lot of improvement. I try to keep him active but maybe stepping it up a bit wouldn't be a bad idea.

Polarbear, are there therapies for dyspraxia or is it more of a different timetable/expectations thing?

We have an appointment in the fall with the Eides so I suspect it will all be sorted out then. Any combo of issues could be possible. As my DH put it, the more I try to figure DS out and read about various reasons behind issues, the more he looks like he has everything and nothing at all.

We plan on sticking with the OT at least until the assessment. We all really like her and she is a nice advocate at his school for us. The handwriting help has been huge. Six months ago he couldn't write his name and could only write a few letters and even fewer numbers. Now he is proud of his writing and his teacher is too.

I think I am just a little discouraged after getting the latest report. He is having a much easier time in school but it is hard to tell if it is because of age, new teacher or OT.

He has improved a lot on the recommended exercises but they have been practiced daily and he is almost a year older. Novel physical activities remain an issue. So his measurable improvement seems suspect. It would be like saying a WISC prep course increases intelligence because kids score higher after the course. I think some of the OT testing measures are things he practices every day so I am not so sure any improvement is of the type that transfers to a life skill.

I think your dh has a good point - there are so many symptoms that overlap among different diagnoses that it's easy to come up with theories while researching that could lead a parent to wonder about all sorts of possible diagnoses applying to their child. And, at the same time, as a parent you really have no idea to what degree those symptoms need to be seen in order to be a part of a diagnosis.


Both. You can address individual skills with OT, for instance, things like buttoning or tying shoes or handwriting etc. OTOH that doesn't mean that the skills will last. Please know I am not an expert and I'm only speaking about my child *and* I have no idea if any of this applies to your ds - so there you have my disclaimer lol! Anyway, dyspraxia is a complicated challenge in that it can impact people across many different body systems and in that it doesn't impact anyone in exactly the same way. In my ds, the way his brain coordinates fine motor skills is impacted, and he needed *lots* of repetition (way above a neurotypical child's level) to learn things like how to tie shoes, how to print, and how to create written expression. He also sometimes loses skills he doesn't continually work on - for instance, the year he learned how to tie his shoes (3rd or 4th grade), he also forgot how to tie them when he had a school holiday for a week and didn't wear shoes he had to tie for that one week. It didn't take 8 years for him to learn how to tie them again (maybe a few weeks), but it was obviously noticable compared to a nt child. He learned how to write in cursive starting in 4th grade, continued to practice and learn it in 5th grade, then didn't use it in 6th grade and by the second semester of 6th grade no longer remembered how to make any cursive letters except for being able to write his name in cursive.

There are things that he hasn't been specifically through OT for that have improved over time. One of those is coordination at things like throwing frisbees and catching balls. He'll never be a sports superstar, but regular work on those things in PE at school combined with (I think) maturity have helped him find a few sports he enjoys.

There are also other things we just don't worry about because they are small things in the big picture of life stretching out ahead of him, and he also has limited free time as it is with fitting in the therapy we feel he absolutely needs and with the demands of schoolwork (which takes him longer than a nt kid - not because he doesn't understand concepts, but because handwriting is slow, his movements are slow, and he struggles with written expression).

So - for any 2e child, as well as any child really, we pick and choose what to put time/effort/$ into and let some things go.

Re timetables - there were quite a few things in ds' early development that either came late (but not late enough for us as parents to realize they were anything other than quirky-late), and a few things he totally skipped (he never babbled or experimented with baby-talk, just was quite for 3 years and then talked like in complicated complex sentences; he also was late crawling, tried it a few times, then really didn't crawl much ever at all).


It sounds like things are going well! You'll understand a lot more about what's going on with your ds after his eval by the Eides. I know it may seem like things are moving slow sloooooow at this point, but your ds is doing well, and you've got a good plan in place for now, so know that you've done a great job so far!

Best wishes,

polarbear

Just updating, our DD has been diagnosed with Aspergers. She is increasingly aware of her lack of sporting ability, how much slower she runs, etc. Late last year she went on a whole day walk (steeply uphill) with her school and was in terrible pain at the end and home sick for a week after. The low tone and hupermobility do amount to real weaknesses that are easy to underestimate or forget to plan for. Especially for her teachers.

Her coordination IS better, and I think that honestly piano and swimming and circus has done the most with regard to left / right integration, crossin the midline, etc. I don't think her OT was the most important therapy in this regard.

And for all the progress she's made, ultimately she is not neurotypical...

I hope you get useful answers KJP.

I find this thread very interesting and am following as well. My son has mild hypotonia, hypermobile joints, vision disorder (also neuromuscular like the hypotonia and hypermobile joints). While he doesn't seem to be as severe or have as severe of symptoms as some of which I am reading here and on the Internet, I do believe he has mild to moderate left/right integration issues. He can ride a bike without training wheels (as has been able to since late 5 years old). He inline-skates and is now picking up ice skating. He plays soccer passably well but other sports he is terrible at... His coordination, of course, is poor.

As a baby, he did not crawl until in his 7 month (I think that was considered a little late but not really 'out of the ordinary' or delayed) so he did cross crawl but not for long -as he started walking in the last week of his 10th month.

His big current issue is swimming. He is really motivated and despite having swimming lessons every day only gets so far ... while the other children move up in the lessons he does not progress. I realize now it is very likely the integration/crossing midline getting in the way.

DS has been getting vision therapy for almost 7 months now and I see a lot of benefits from that. But he has been getting OT for years and I am kind of disgusted with it as he always has a two year delay in fine motor writing skills and the gap never seems to close. The most improvement I have seen in OT has been with the introduction of the vision therapy. Once he started VT, his OT seem to be having much more of an impact.

Our school psychologist suggested a very progressive innovative OT place near to us and I am excited about starting DS there to make further progress in this area of left/right integration http://www.atotalapproach.com/ . The owner/director is big on the whole integration thing and her therapies are very geared to that - integrated the senses, the hemispheres, reflexes, etc. I am so hopeful. And I hear wonderful things about this place from the school psych as well anecdotal.

I am wondering if anyone has sought or considered chiropractic care as treatment for these issues? I stumbled upon a brief experience with chiro care for these issues quite accidentally and surprisingly it seemed to help. When DS was learning to ride his bike without training wheels - he was really having problems - uncoordinated, low stamina, etc. All the other kids in the neighborhood could do it and had been for at least a year or so. But he seemed pretty hopeless. (He also NEVER rode a big wheel, tricycle or anything like that despite us buying like 4 different kinds and encouraging him a lot - he refused and now I know it was that he just couldn't do it physically). He actually didn't even ride his big bike with training wheels more than a handful of times. What he actually rode a lot and what he enjoyed was the balance bike (a two wheeler with no training wheels and no pedals). I guess his balance is decent - it is the coordinating of pedaling, steering and balancing that he couldn't do.

Anyway, despite really being motivated to ride his two wheeler pedal bike he started feeling pretty hopeless and he began to refuse to try. I stopped all encouraging of it as I was becoming frustrated and exasperated and I did not like 'who I was becoming' when trying to teach him. It looked pretty bleak for the bike riding. Around the same time I became friendly with woman whose husband was/is a chiro. I was telling her about DS's hypotonia one day and how I was worried. She said chiro care can help with that. So, I am pretty open-minded I thought "okay we'll give it a shot." I took him to her husband to be adjusted. After the 3rd or 4th visit. DS got out his bike with DH and just started picking it up...There was no stopping him after that, within a day or so he had it mastered. I actually hadn't even connected the two - i.e., it never dawned on me that the chiro treatments could/may affect the bike riding. But when he got it so quickly and so well after weeks before seeming so hopeless and at the point of refusing to even try, I just have a strong suspicion that the chiro actually had something to do with it. DH said it was merely coincidence. I ended getting sick with pneumonia and we dropped the chiro appointments. I think he only had like 6 in all? maybe as many 8... I can't remember. Anyway, at the end of the last summer when I saw how hard the swimming is for him, how poor his coordination is with regard to swimming, I decided that this spring I would take him to a pediatric chiro and ghet some adjustments before swimming lessons in early summer. I want to see if that helps (as it seems to have helped with the bike riding). Now after reading about all of this, I think I will ask the chiro's opinion on chiro care affecting these type of issues. Just wondering if others have any thoughts or experience with this. I am going to do it anyway so I will report back and let y'all know if we have the same experience with the swimming as we did with the bike riding!!! I hope so - DS really really wants to at least be competent swimming and go down the big slide like all the other kids his age!

My son's bike riding problems are the same. We have a balance bike, small bike with training wheels and a larger bike. Last week he made a new friend in the neighborhood, a boy one year younger that had just moved here. The four year old was zipping all around on our small bike with the training wheels. DS tried and tried and couldn't make it go at all.

It was the first time I saw concern on his face about his differences. He has had a really good attitude about not being as fast or strong as his friends. He usually just shrugs and says "I am not very good at -----, lets do this instead"

A note on chiropractic: my SIL is a pediatrician and very mainstream. She had a patient with recurring ear infections. The kid's mom decided to take the kid to a chiropractor. My SIL was skeptical but wished them the best. The kid hasn't had an ear infection since.

Hope it works for you.

My DD had a course of cranio sacaral work with a specialist physio ( some osteopaths or chiros do this too) and I do think it was beneficial. Hard to say in isolation, she was so having OT, swimming, piano, etc. Diet change had the biggest single impact.