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    #222237 09/12/15 04:51 AM
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    clb Offline OP
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    Hi folks,

    Has anyone had experience with correcting "retained reflexes" from infancy. These are a set of reflexes that serve us well as babies, but are usually integrated within the first year of life. The Moro reflex (the one where the baby startles when falling asleep) is the only one had had heard of before recently.

    My son completed his vision therapy with great results when he was in third grade. Then at the end of sixth grade, we discovered that he needed to do another round. His eyes were back to skipping all over the page. It's unusual for kids to have to repeat it. He has lower muscle tone in general, and I know from his earlier years of OT that finer muscle control follows the development of gross motor control. So in poking around more, I've found a series of websites talking about these reflexes. I had my sone do the basic tests, and he has several of them. People seem to be making the connection between these primitive reflexes and a variety of muscle tone/learning difference issues. What is being said makes sense based on my son's experience. But of course there doesn't seem to be a lot of published research. It seems to be resolved by doing exercises that look a lot like things we once did in OT.

    Has anyone else worked on this with their children? How much of a time commitment was it? Did it benefit the child? How? Did you think it was worth the investment?

    Many thanks for any info!

    clb #222240 09/12/15 07:41 AM
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    This is another area where you may want to be careful. The scientific evidence for this is limited.

    clb #222243 09/12/15 08:03 AM
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    Flyingmouse, can you explain more? I have a friend who is an OT and she says my DS has this. I haven't looked into it much. He does have low tone.

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    clb Offline OP
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    I'm finding some good exercises, thanks! 5 min a day seems doable. How long until your daughter saw results? And did you see an impact once the reflexes were integrated?

    clb #222273 09/12/15 06:36 PM
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    Ultramarina, there is absolutely no scientific evidence for this. It does not make sense from a biological perspective. The presence of primitive reflexes indicates that there is a neurological problem like cerebral palsy because it suggests that neurons are not myelinated correctly. Doing exercises to correct the problem will not cause remyelination of neurons.

    clb #222281 09/13/15 06:14 AM
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    Huh. I don't see my son as having problems with sensory integration at all. He shows low tone issues--fatigue when sitting and writing, easily fatigued in general, "floppy," ankles roll in, hyperflexible. His ped mentioned CP as a possible concern when he was baby and people were freaking out about him, but he had a neuro consult that came up clean except for unexplained hypotonia.

    clb #222283 09/13/15 07:14 AM
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    DS has DCD and I took him to a ped. neurologist when he was 4 1/2. The neurologist mentioned "dyspraxia" but in the report there is no diagnosis of dyspraxia. Here is what it says under motor examination and reflexes:
    Normal muscle bulk. He has diffuse mild hypotonia. He has appropriate full strength in his bilateral upper and lower extremities. Coordination: No tremor or ataxia. No dysmetria with finger-to-nose testing. Reflexes: Deep tendon reflexes in biceps, pattelar, Achilles tendon 2+ and symmetric. Babinski downgoing biltarally. No ankle clonus. Sensation intact to light touch in four extemeties. Gait: His gain is somewhat flatfooted with running. He can stand on each leg for a couple seconds. He can do a 2-footed jump forward. Pes planus observed with standing."

    So from this I concluded that he had mild low tone and flat feet. Is there anything else useful? Of course this is from almost 4 years ago so who knows how things have changed. He still has issues with coordination.

    clb #222287 09/13/15 09:43 AM
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    She did blood testing to look for muscular dystrophy, because DS was complaining about his legs getting tired when he walks a long distance, but otherwise that appt. didn't help much. I originally took him because his preschool early chldhood screening was really bad and the screener kept talking about his hand tremors, and other people had mentioned that as well. Since she mentioned "dyspraxia" that was then on my radar, and later on we got a dx of DCD from a neuropsychologist. I wish I had had an actual Dx when he was 4.5 because I could have pushed for a better IEP earlier. All he got at age 4 was speech articulation and I had to take him for private OT and PT.

    DS had pretty much normal infant milestones. For instance he was crawling by 8 months and walking well by 12 months, but then we failed to see much progress for the next couple years.
    His scores on motor tests went down from average at around age 3 to below the 5th percentile a year or two later.

    He is now 8 and can't hang onto a bar with his hands for more than 3 seconds (I have tested this), so I find it hard to believe his muscle strength is normal.

    clb #222323 09/14/15 01:27 PM
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    The connection between the muscle groups is what struck me for my son. For example, when he did the "duck walk" with his feet turned outward, his arms and hands turned outward as well. I, however, can turn my feet in and out to walk without there being a connected movement in my arms. He had the connections on other items too.

    This also makes sense to me because when my son was much younger, an unusual number of his facial muscles were connected to his eye movements. If his eyes went to the left, then so did his mouth, and plenty of other facial muscles too. It was quite odd, like a small child with the random facial expressions of Tourette's syndrome. One of his VT exercises then was to follow a pencil with his eyes while also singing the alphabet. It was very hard at first, but eventually he got it. Along with the other VT, that issue went away. Thank goodness! People will overlook things in a younger child that they then react to as offputting in an older child/adult.

    On the research front, I've observed that there is little in the way of major scientific studies on the topic of retained reflexes. That's why I'm inquiring about people's direct experience. Portia's example with the startle reflex, for example, sounds a lot like my son.

    To be honest, on the retained-reflex point, I'm not particularly worried about the research not already piling up 10 feet high. I've learned so much from helping my son work through sensory issues and other learning difference challenges: a) The more scientists learn about how the brain works, the more we realize that we haven't explored and documented scientifically, b) OT, VT, etc. often ask the child/parent to do what look like random, kooky things that turn out to have an impact. c) A general theme that is reiterated again and again in scientific brain research is that how interconnected are physical and mental processes, and that what seem like smaller physical points often manifest in big and surprising ways. d) Even pediatricians and specialized educators don't always know about valuable interventions, so it's up to parents to be alert and determine if something is appropriate for our child.

    If I wait for the funding/research to scientifically document every intervention that has improved life for my son, then he would be 50 before we took steps to address anything. Since we are already stuck doing VT, working on these reflexes won't cost us much more in terms of $, and adding 5 minutes of "starfish" or some such to our eye exercise routine isn't a big deal for us. After a few months, we can decide if we are seeing progress and results.

    Every family has to evaluate the investment of time and $ for themselves. Forums like this are very helpful in doing that. Thanks!


    clb #222337 09/14/15 09:16 PM
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    Originally Posted by clb
    On the research front, I've observed that there is little in the way of major scientific studies on the topic of retained reflexes. That's why I'm inquiring about people's direct experience. Portia's example with the startle reflex, for example, sounds a lot like my son.

    You may not be searching for the right terms. MD/PhD types usually use the term primitive reflexes in the literature (other names here). Searching by individual reflexes (e.g. Moro reflex) would get more hits. Also, frontal release sign is another technical term. If you use these terms on PubMed and Google Scholar, I guarantee that you'll get more hits than you know what to do with.

    But the thing is, as Flyingmouse pointed out, this problem is generally associated with an underlying cause, rather than being something that's studied in and of itself.

    This won't make me too popular, I think, but if you don't have a biomedical background, it can be very difficult to get accurate medical information online. This is because the web is full of predatory types and charlatans who talk a good spin but are actually spewing pseudoscience (Seaweed is the best treatment for a thyroid condition!; yes, I've read that).

    Using technical terms in a search instead of popular terms helps a lot. Also, if you know how to recognize reputable sites, you'll find reliable information more easily. These sites include university medical centers, .gov and other government sites outside the US, major hospitals like the Mayo Clinic and St. Jude's, and sites with a badge called HonCode). As an example, Dr. Mercola's site is NOT trustworthy. Predatory sites like his excel at telling people lies that make them feel good while not solving problems (or making them worse).

    I agree that medical decisions are personal, but also know they're best made when based on sound information. This helps avoid interventions that are useless or potentially harmful (e.g. seaweed-and-the-thyroid and anti-vax stances). It also helps you get to the right treatment with minimal delay.

    I started working in the area of rare diseases 15 years ago. I know how difficult and frustrating it is to get a diagnosis. I also know how easy it is for an MD to look at an array of clinical features and not be able to see the forest for the trees --- and how easy it is for the predators to take advantage of those facts.

    I'm currently privileged to be leading a project that involves a free software app aimed at helping diagnose rare diseases. The whole point of what we're doing is to ease the very messy diagnosis problem described in basic terms above. I also know that the research community doesn't have all the answers, even when there is a diagnosis. But the thing is that, it's the best we have right now.

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