We finally had our long awaited appointment with geneticist to see if we could identify a common thread to explain DD11's multitude of issues. She labeled it Developmental Dyspraxia. Sound familiar to anyone here? Does this tell me anything I didn't already know?

We have previously been given dyslexia, dysgraphia, dyspraxia, math disability, CAPD, dysarthria, visual processing and fine motor diagnoses, along with eosinophilic esophogitis. Migraines and anxiety well controlled. Past diagnose of ADHD-Inattentive discounted by subsequent evaluators, teachers and parents. Neuropsych labeled her "NLD-ish", not because she appeared to have NLD (none of the social issues associated with NLD are present) but because "it's a useful diagnostic concept" and "easier than saying super high verbal along with dyslexia, dysgraphia, dyspraxia, math disability, etc". (Officially labeled Processing Disorder - predominantly non verbal type) No one ever said anything about DCD which seems to go along with Developmental Dyspraxia - looks like it might even share a diagnostic code.

So does this tell me anything? There might be a genetic link but since DD has a needle phobia it doesn't seem worthwhile to do blood work if it won't provide anything specific to help with her situation. Yes she has the speech, motor and LD issues I read about online but not the social, emotional or behavioral issues. Certainly not the immaturity associated with developmental dyspraxia.

Anyone else receive this diagnosis and can send me in the right direction? I have had people dismiss the dyspraxia diagnosis saying "that just means she's clumsy". I assume this is different.

Any and all input welcome. Thanks in advance.

HI Pemb,

Our ds has a diagnosis from his neuropsych of DCD (Developmental Coordination Disorder), which was a diagnosis under DSM-IV (not sure if it still exists under DSM-V?). Our neuropsych told us that "dyspraxia" is essentially the same disorder but is a term more commonly used in the UK. I haven't heard the term "developmental dyspraxia" previously, but from everything I've read dyspraxia presents in many different ways from individual to individual. It's not about being "clumsy" but instead is a disconnect in how the brain communicates with muscle movement. People with dyspraxia/dcd sometimes also have apraxia of speech. You couldn't point to one person with DCD, however, and assume that the next person you met with DCD would be impacted in the same way.

Re the "developmental" aspect - I'm not sure exactly what it means... but fwiw, our ds definitely had signs of dyspraxia/dcd as early as a year old, maybe earlier. We didn't *recognize* them as signs, but they were most definitely there had we known what we were looking for. DS has never had genetic testing, but I suspect his grandfather had dyspraxia. DS also has several cousins with dyslexia, one with dysgraphia... I suspect they are all somewhat tied together somehow.

In summary, I doubt that having yet another diagnosis (DCD) tells you much of anything - you already have researched and are so on top of what's going on with your dd. You already had a dyspraxia diagnosis, and you've been actively seeking help for your dd for years now.. so I'm guessing, it's just another diagnosis but doesn't change much. Does that make sense?

Hope that helps a bit!

polarbear

Don't know about "developmental dyspraxia" but from what I understand DCD/dyspraxia is a spectrum, much like so many other challenges. DS doesn't have anything that I would consider to be social/emotional/behavioral challenges, and neither do the few other children I know that also have DCD. I also hadn't heard of those types of challenges being a part of DCD, but I wonder if they might not occur in some people due to the challenges dyspraxic individuals can face with communication and control of motor function.

pb

In agreement with polarbear.

My DS8 has a DCD diagnosis, which I had thought was just another term for dyspraxia? I've not heard of 'developmental dyspraxia', unless the 'developmental' descriptor simply refers to a developmental vs. somehow 'acquired' condition?

I understand that DCD affects each kid differently - another boy at DS's school is apparently tripping over his feet all the time, so it's much more obvious. My DS - you have to watch to notice the poor motor planning (or see the bruises on his legs at the end of the day).

My DS does not have dyslexia, dyscalcula or dysgraphia as such (although he does struggle with handwriting). Was the geneticist saying these are related to, or part of the dyspraxia?

FWIW - After reading about NLD, I also thought DS was 'NLD-ish' - without the social or reading comprehension issues.

ETA: Also, found this link, which probably doesn't have anything new to you in it, but I found a good summary. It also listed some symptoms I see in DS but hadn't connected to DCD (re: organization and not following instructions)

http://www.medicalnewstoday.com/articles/151951.php

Interesting - I forgot to mention that she said this is much more commonly diagnosed/researched in Europe and the UK but almost totally ignored in the US. Also that many kids labeled as being on the spectrum really have developmental dyspraxia, not autism. She didn't mention DCD - I found it online when I looked after the appointment.

Yes to above. "Developmental" simply distinguishes it from acquired (e.g., from a TBI or stroke).

And yes, essentially the same as DCD.

In case anyone is interested, I found this article to be a good overview of all the terminologies (dyspraxia, DCD, etcetera).

It also mentions that dyslexia, dysgraphia, and so on are considered co-morbidities, rather than part of the diagnosis, although the authors consider a possible diagnosis of "DCD-plus" in some cases.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2066137/

The video on the MNT link above was pretty enlightening. If only I'd seen it like 6 years ago. I wish I had known about this before this past year, when he was flagged for DCD at 9. I can't believe how much I have missed and wish I'd known when my DS was younger. His cognitive abilities were so strong that it just seemed like the motor things were written off.

I guess the approach we took worked in some ways -- just by happenstance (with handwriting being the exception). Like, I knew he had poor balance, so we both took Tae Kwon Do together for a year, and he really benefited from that. We encouraged non-ball physical activity, we did a lot of play-dough and sensory play, beading, just because it was suggested for reaching milestones (not specifically due to DCD). We didn't push bike riding (he's great at it now), gave him a big wheel. Other things, I just felt like, you know, "we'll get there," like with scissors or shoe tying. And he did, just more slowly, though he still gets frustrated with things (like trying to teach braiding string to him, while his sister, two years younger, caught on right away, so he gave up).

I think those motor issues are the sole reason nobody thought he actually needed to be way more cognitively challenged at school, and he suffered quite a bit the first couple years of school on that level. I think his case must be fairly mild, and since it doesn't seem to impact school work much any more -- it used to make him frustrated to not be able to demonstrate as much as he knew due to time, but to the teacher, that came across as average or just about average level written work, but he has seemingly found his own work-arounds. He gets no accommodations (other than a couple for vision), and was able to grade-accelerate this year (and is doing well), but I do still wonder about as he gets older if his processing speed will be overly taxed. But he's happy right now.

As for a genetic component -- I also think that doesn't have to be a known disorder, but something in the family line. I have visual processing issues, and was always clumsy with bruised legs as a kid, loathed balls, and focused on other physical activity (like running and gymnastics), so it seemed natural to encourage DS to do the same -- benefit from my work-arounds. I cannot for the life of me master a multi-button game controller and games where you watch multiple things happening, so DS has that up on me, and I think that's been actually good for him! Heck, I couldn't even do well at a simple 80s arcade game -- I didn't know I had a reason for it back then. He's definitely not a kid who will play for hours, though, as it probably does fatigue him eventually.

Related: I heard a fascinating story on This American Life a couple weeks ago about a genetic mutation, more than one, actually, that had interesting effects on a small number of people. What struck me was the determination of this woman to figure out what was going on -- she spent so much of her life researching and making connections. That was powerful to me. You never know what you might discover just though your own personal research and persistence and who you reach out to. That's why I think you might appreciate the story. You can read the story or listen to it below:

( Read on ProPublica or Listen at This American Life, Act One, 35 minutes)