Gifted Issues Discussion homepage Forums Twice Exceptional Retained Primitive Reflexes??

I have wrote before about my ds8....through a series of events I found that he had a high possibility of having dysgraphia. His school was not willing to test him for it so we went a private route and took him to a pediatric therapy office. Since taking him we have found that he has an even higher possibility of having Asperger's (we wont find out for sure until the 24th of this month). The psychologist scheduled him for 3 different assessments...Occupational, Physical and Speech Therapy.
He has trouble with simple motor tasks such as: handwriting, tying his shoes, catching a ball, etc. He is now having Occupational Therapy once a week.
We have not found out the results of the ST eval yet.
He had a PT eval because he is a toe walker. When the therapist told us the results of the eval she informed us that ds has something called "Retained Primitive Reflexes". When I researched this the symptoms seemed to fit my ds to a T. He has Physical Therapy once a week to integrate these reflexes.

Has anyone ever had their child dx with this? Is this a legit dx?

Supposedly, once they integrate these reflexes then all these symptoms will disappear. That just seems too easy after all that we have been though with ds over the last few years.

YES! My DS also can not do simple motor tasks such as: handwriting, tying his shoes, (catching a ball - much better now after vision therapy), etc. even after years of Occupational Therapy. He does not have any autism spectrum disorders and no speech problems. I am pursuing a dysgraphia diagnosis, too. And, like you, I recently had my son evaluated with a battery of therapy evals and a place called "a total approach" (as the name indicates they look at everything, vision, PT, OT, Auditory, Language, tone, reflexes, sensory, etc. all different stuff) - it was a more complete eval than any one he has ever gotten (at the other places they just look at one aspect i.e., OT skills in isolation). Anyway, at a new therapy place, the therapist showed me how he has "Retained Primitive Reflexes." I had come across that term/condition before in my researching DS's problems and it definitely made sense with my DS. I was actually relieved when she showed me. It was a very interesting eval to watch albeit a bit depressing. My poor child can't do simple things that require coordinating different parts of his body AT ALL like a jumping jack (no wonder he can't get swimming down despite years of lessons). Anyway, I haven't gotten the full report or consult yet (should get it this week) but he apparently definitely has the retained primitive reflexes. I am really excited have DS start their therapy (they tailor it specifically to DS's challenges) and to be finally doing something to get to the root of DS's problems. I have been frustrated because something is very wrong and years of OT while somewhat beneficial don't seem to be getting at the core of his problems at all.

So we are on the very same path! we need to keep in contact and compare notes!

So, I also feel your wondering if this a "snake oil" type thing. I know. I have the same concern. On the one hand, I feel like "woohooo - finally, my DS can start 'curing' his problem/issue instead of just band-aiding it." On the other hand... maybe it won't do much but take my money. However, at least with regard to the therapy place that we are using, I hear they have GREAT results. Really great. And I heard this from the school psych too - who said it's the only place she notices a significant difference after the child goes through therapy there. So I am still so optimistic. Also our vision therapy practice works with this place - again, they look everything and neuromuscular vision issue sis a often a big issue/piece of the puzzle that is missed.

ETA - My Ds has already gotten 8 months of vision therapy and I will second that helped his OT stuff tremendously. I will second that they do compliment each other nicely. And I am very happy we are got the vision therapy for him. However, he is still years behind and at the 5th percentile for visual motor integration. I think what my DS probably needs now is some sensory therapy (he has relatively mild sensory issues), whatever it is that takes care of the retained reflexes, and getting the two brain hemispheres communicating a little bit more smoothly. Just my suspicion of the gist of what I will be hearing at the consult.

I though this blog was quite interesting on retained primitive reflexes and how to spot the 'snake oil' treatments/therapies claiming to address this issue. http://www.thecortexparent.com/what-you-may-not-know-about-primitive-reflexes/

ANy thoughts of some kind of muscular dystrophy? That can be diagnosed by a muscle biopsy.

In our case - yes. Particularly since my son has mild hypotonia and hypermobile joints (particularly in his hands). We are seeing a metabolic and connective tissues specialist and I am planning on discussing doing a muscle biopsy then. we have discussed it a little bit with a neuromuscular specialist but she felt he was so high functioning it wasn't worth the pain and discomfort of going through MRIs and/or muscle biopsies to find out. But I am not so sure.

Muscle biopsy is minimal pain- just a local. It may be worth it to have some kind of a diagnosis.

ok, I have never heard of vision therapy. what exactly does that entail? Does this have to do with actual vision itself or is this just a name of the therapy?

They did ask me to get ds eye's checked, which I did and he ended up with glasses.

Ds doesn't have a speech problem that I have noticed other than echolalia. In fact he tends to pronounce words almost too exact, if that makes sense. The psyc said that she wanted him to have a speech eval to see how he interacts in social conversations. Maybe to document the echolalia or solidify the possible aspergers dx?

The physical therapist had ds do some exercises in front of me so that I can see what she was talking about. It was very interesting. For example, ds can't turn his head to one side and keep the other opposite arm and leg straight. As soon as he turned his head to the right, the left arm and leg immediately bent. I said, "you have got to be kidding me!" Everything she said makes total sense but like I said before...it just seems too easy. Like, oh that's all his problem was this whole time?

I had read that kids with retained reflexes can be misdiagnosed as adhd or aspergers or have it have the retained reflexes in conjunction with adhd or aspergers.

One of my main concerns was that ds would go through all this therapy and several months later revert back to the previous behaviors. The pt assures me that he won't...we will see I suppose. Also, this is a lot of money that I am shelling out for this therapy...multiple therapies every week for however long, even after insurance pays their share adds up quick and I will be so disappointed if after all the time, money and energy spent...I see no changes. Although, that is a chance I am willing to take for my ds to have a better quality life.

I have been trying to research the primitive reflex dx as much as I can but most sites that I have seen are related to businesses that seem to be promoting what they can do for it. I have not been able to find anything that seems legit. His pediatrician nor any of the 3 PA's that also work there have heard of "retained" primitive reflexes.

When he has his Occupational Therapy he works on things like: tying his shoes (he can do this but with great difficulty), throwing a ball in the air and catching it, handwriting, sequencing and exercises that help strengthen his hand and fingers. Well, so far that is what he has worked on. We are new to this process and have only been 4 times.

As far as the Physical Therapy goes, she starts off doing exercises to relax him. She says that he is a huge sensory seeker. They work on things such as the toe walking, posture (he stands with his shoulders curved in and his shoulder blades in a winged position), the way he sits (which is in a W position), ect.

Both the ot and pt give me "homework" every week...handwriting, throwing a ball, reflex exercises, etc.

I don't get to see the actual therapy sessions. The therapist calls me into the room when they are done and gives me a run-down of what they did. Part of me hates that because I am the kind of parent that wants to be right there knowing EXACTLY what is going on but another part of me knows that may be best because my ds usually acts better for others when I am not present.

After the initial pt eval the therapist gave me a detailed print out of her assessment. With every aspect that she looked at my ds was lacking in every single one of them. He has issues with every primitive reflex, posture, muscle tone, balance, coordination...can't walk a straight line, can't do a sit up, push up, jumping jack..to name a few right off the top of my head. He still can't swim on his own, can't hold up a baseball bat & can't ride a bike without training wheels.

It's really heartbreaking for me to watch him struggle to keep up with other kids his age. Intellectually he is far beyond most kids his age so they don't understand the way he thinks therefore, they think he is weird and don't want to play with him. Then add on top of it all his physical struggles and that makes it 10X worse.