Dyspraxia/Apraxia/Motor Planning Disorder - Mothering Forums

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#1 of 15 Old 12-13-2006, 10:21 AM - Thread Starter
 
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Okay, so Maura's 3 1/2 now, we've been doing the whole gauntlet of testing, are actually due back at the neurologist soon for a re-evaluation and will probably end up at a geneticist after that if the neurologist can't find anything (which he hasn't.)

So I've been scouring the internet and NORD trying to come up with ideas as to what Maura might have - the neuro said that she has SOMETHING - but what that is, we may never know.

Meanwhile, took her to a private ST who said "I'm almost positive she's apraxic." Impressive since Maura doesn't have many words and wasn't that chatty at first (though did warm up halfway through and got very jabbery.) I mentioned this to Maura's preschool teacher, who's also an ST, who nodded her head in agreement over that diagnosis.

And across town - lol - Maura's PT and OT have always constantly mentioned "motor planning" about Maura - as in "She has problems with motor planning." Well, verbal apraxia makes sense if she has motor planning problems in other areas as well.

So on a whim, looked up "Motor planning disorders" and found dyspraxia. Though it can also be called apraxia as well. But it's someone with fine/gross motor skill delays who has to almost plan out more each movement. This is SO my dd. Maura doesn't just hit steps and go. She will stop, think, then walk up. But she can crawl up with the speed of light. She could use a fork, but it's just faster to use fingers. She's trying to figure out how to tie her shoelaces and can get her shoes on, but b/c of her low muscle tone, she needs DAFO's to support her ankles. And so on.

Could it really be this simple? Could it all just be a motor planning disorder and not some chromosomal disorder or metabolic disease? It's mind boggling to think that it could all just be about motor planning. She's never lost skills, gained slow but steady, though since starting preschool, has gained more skills more quickly. And socially she's always been on target.

I'm afraid to get hopeful that this is it. I've resigned myself to the fact she has something she may never outgrow or overcome, that she may well indeed be reliant on us or her sibs for life. But if it's just dyspraxia...she could overcome most of that and become independant by adulthood maybe...

So does anyone know anything about this????
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#2 of 15 Old 12-13-2006, 11:33 AM
 
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Yes, there are several moms of kids with apraxia on here. It sounds like you may be on a good track here. I know when I discovered apraxia on a website it really clicked in my head - that was my daughter. I spoke to an apraxic-knowledgeable SLP on the phone and she pretty much diagnosed her over the phone from my description (we did do a full evaluation in person after that). You mentioned the SLP diagnosing her without her talking much and that's not really surprising. When Charlotte was diagnosed she had 3 words and really didn't try to speak much at all. It was actually something of a symptom because often kids with apraxia simply stop trying to talk as they know it doesn't work.

Here is a great website with tons of information:
http://www.apraxia-kids.org/

I recommend reading up on omega fatty acids (long chain DHA and EPA in particular) as they seem to really work wonders for many kids with apraxia. I recommend the Nordic Naturals Complete 3-6-9.

Find a great SLP who is really knowledgeable about apraxia. This is harder than it sounds as too many parents tell stories of going to speech therapy for a year with no progress with the wrong SLP. It sounds like the one you got the eval with might be a good choice. See what her therapy methods are. Therapy for apraxia should be a minimum of 1 one hour individual session per week. Group therapy isn't usually helpful. Most websites say they recommend at least 2 one hour sessions per week, but I think at this young age you have to go by your child with that. Our SLP was concerned about burn-out when Charlotte started at 2.5 years so we did once a week. This fall (age 3) we've added an additional half hour of therapy in the pool.

Sensory issues often seem to go hand-in-hand with apraxia (apraxia is even listed as a sensory processing disorder in the new edition of "The Out-of-Sync child"). Our SLP's office actually has a small gym in it because research has shown that the kids respond better to therapy if they can do large muscle movements first to start to organize their body. We've even seen a tremendous jump with Charlotte this fall now that she has her gymnastics class in the morning before speech.

I've got to get going, but feel free to ask any questions you want. I'll be back later this afternoon.
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#3 of 15 Old 12-13-2006, 12:37 PM - Thread Starter
 
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Well, looks like we're on a good track then - Maura's day of preschool actually starts with gross motor skills work in the gym - lots of running, playing, working on how to pedal bikes, etc. They even have a swing for the classroom. Maura doesn't seem to have sensory aversions - she's almost the opposite end, where she craves lots of sensory input. She loves to swing and be swung about, fabric stores are great fun for her b/c she loves touching the different fabrics. She also has a higher pain threshhold than most kids - she will cry when they draw blood, but not much, and only if they're having problems finding the vein (the second time we went to the lab, the nurses remembered her b/c she was the little girl who didn't cry.) And we have re-started the Omega-3's (we use the Children's DHA by Nordic Naturals.)

It would be lovely if we finally figured out the puzzle that is Maura...but at least now I have something I can work with!
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#4 of 15 Old 12-13-2006, 02:03 PM
 
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Oh, peekyboo, after all you've been through with Maura, I hope it's this simple and, well, workable. I'll keep my fingers crossed for you.
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#5 of 15 Old 12-13-2006, 03:05 PM
 
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Your daughter sounds a lot like my son who is also 3. His neurologist doesn't have a diagnosis but mentioned "motor planning" as a problem. His ST had diagnosed him with apraxia, as well. He has improved greatly since beginning preschool. Like your daughter, he has always been more careful especially with physical things (going up/down steps). He has had metabolic & chromosonal tests which were all normal. He has had and EEG and just had his 2nd MRI today. My question is--how does this type of problem/delay happen--what caused it? That is the question that drives me crazy and I may never get an answer to.
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#6 of 15 Old 12-13-2006, 03:08 PM
 
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yeah, i was also going to mention the link with sensory integration. read The Out -of-Sync child and see if anything else meshes.

if this is what is going on, i highly recommend therapeutic horseback riding at some point.
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#7 of 15 Old 12-13-2006, 07:49 PM - Thread Starter
 
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Originally Posted by kchoffmann View Post
Oh, peekyboo, after all you've been through with Maura, I hope it's this simple and, well, workable. I'll keep my fingers crossed for you.

Aw thanks! You know you're hitting a new low when you find yourself wishing your child "only" had autism...which I have...even knowing that autism is so NOT a cakewalk and has its own sets of hurdles and issues and headbanging.


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My question is--how does this type of problem/delay happen--what caused it? That is the question that drives me crazy and I may never get an answer to.
It is annoying, isn't it? Especially when people ask what's wrong and you say "I don't know" - like you're some sort of dunce. As to what causes these things - who knows? With Maura, I was so careful and cautious during the pregnancy. The only thing different with hers than my other three was I was on amoxicillian for strep. That was it. Otherwise, healthy normal pregnancy and actually the best birth experience of them all. Some people ask about vaccines, but there was something "off" about her before she ever had a shot, I just didn't realize it until she was about 6 months old. I was also dealing with PPD so wasn't quite as on top of things as I usually am.


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yeah, i was also going to mention the link with sensory integration. read The Out -of-Sync child and see if anything else meshes.

if this is what is going on, i highly recommend therapeutic horseback riding at some point.
I actually have that book around here somewhere - as for the horseback riding - there are a few places around here but they're so expensive! $50 for 15 minutes and the like. Though we have new insurance, I should see if they cover it....they cover private ST...
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#8 of 15 Old 12-13-2006, 07:51 PM
 
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oh man. ours is $25 for a full hour (even goes over sometimes) and the instructor is seriously cool. and they have financial aid!
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#9 of 15 Old 12-13-2006, 07:53 PM - Thread Starter
 
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oh man. ours is $25 for a full hour (even goes over sometimes) and the instructor is seriously cool. and they have financial aid!
These places have financial aide, but we dont' qualify for it (darn middle class comfort!) Oh, and you need a specific diagnosis, which so far, my dd really doesn't have (though I have no clue if apraxia is covered in that...)
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#10 of 15 Old 12-13-2006, 09:20 PM
 
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Sounds like you are on the right track to me too (I hope so so you have an answer). My son has motor planning issues as well but also another dx. I wanted to mention that the theraputic riding places around here are only $20 a half hour. More manageable and I think a half hour at a time is plenty for most kids!

Rachelle, mommy to 8 year old boys! 

My Blog-free homeschooling finds and my lesson plans and link to the new User Agreement

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#11 of 15 Old 12-13-2006, 11:19 PM
 
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It sounds alot like the diagnosis from the eval with our 3yo DS. He spoke maybe 3-5 words, many signs -but nothing I figured they could use for diagnosis. (Now his SLP finger cues on her own face, sometimes his to teach him where sound should come from and how it is made)
In a mere 2 months, we have seen tremendous verbal increase! Today he actually said a 3-word sentence. I nearly cried with joy. EFA (Omega) helped too, IMHO.

Also - FWIW, our DS walked at 10mo, and has always been a seeker of contact. He likes tight hugs, touching, chewing everything, rubs earlobes. SO, I think apraxia w/ sensory issues vary widely. Although apraxia is also associated with a "clumsy child" - that does not describe our son at all. Nevertheless, the finger cueing has worked magic to teach him how to verbally motor plan.

I wish for you it is this simple.
Find a good SLP with apraxia experience and RUN with it!

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#12 of 15 Old 12-14-2006, 12:50 AM - Thread Starter
 
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I've learned there's two degrees of sensory issues - most people recognize the ones where the child is ripping off clothes b/c the seams bother them, or crying b/c the noise level is too much for them. But the opposite end are those who seek out stuff. The ones that are touching things, mouthing things, running their hands through stuff. That's Maura. But it's not really considered a problem I think b/c there's no "treatment" for it. Which is slightly annoying seeing as I would love her to not put stuff in her mouth! She's almost worse than our puppy

For those of you not following our saga, lol, Maura has delays in all areas. She didn't walk until she was nearly 23 months old. She started pointing right after that. She also figured out the pincer grasp at that age. She's very cautious yet independant. She tries so hard to be a big girl and keep up with her siblings, but she's also so laid back, it's hard to get her motivated to do stuff like talk. She isn't easily frustrated - which sounds like a good thing but isn't always. She does still seem babyish to me, but where as in August, I would have compared her to a 16 month old, now she's more like a 2, maybe even possibly 2 1/2 yr old. She's understanding more, following directions more, doing more big girl things like zipping up her coat and putting on her shoes (well, when playing - I have to put her shoes on over her DAFO's.)

Anyway, today, when thinking about all this, I found myself trying not to get all emotional. It would be such a relief! And so simple comparatively.

The private therapy place we've started at does deal with apraxia/dyspraxia - but that doesn't mean I won't keep my eyes and ears open for others, just in case.
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#13 of 15 Old 12-14-2006, 01:15 AM
 
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My oldest has/had dyspraxia as one of her diagnosis. One of her first infact when she was 3 1/2. She is doing pretty darn well now! She will never be an incredibly coordinated ballet dancer or gynmnast but she does ok for herself.

We found a couple things helpful.

First, Theraputic Horsebackriding - this has been the single best therapy for her particularly for her dyspraxia and low tone.

Karate or martial arts (when older)
Sensory integration therapy
Swimming

Oh and she got OT and PT in preschool which also helped. Good luck!

Renee
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#14 of 15 Old 12-14-2006, 01:21 AM
 
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Originally Posted by peekyboo View Post
I've learned there's two degrees of sensory issues - most people recognize the ones where the child is ripping off clothes b/c the seams bother them, or crying b/c the noise level is too much for them. But the opposite end are those who seek out stuff. The ones that are touching things, mouthing things, running their hands through stuff. That's Maura. But it's not really considered a problem I think b/c there's no "treatment" for it. Which is slightly annoying seeing as I would love her to not put stuff in her mouth! She's almost worse than our puppy
Yeah and just to mix things up more a child can be sensory seeking or (undersensitive which is still a third category) in one area and oversensitive in another area. Charlotte does that some. She is super sensitive about certain sounds, but she seeks proprioceptive and vestibular input

I don't know if you've tried this, but I just wanted to suggest maybe trying brushing or spinning or a weighted blanket to give her some serious sensory input and to lessen her need to seek it out through putting stuff in her mouth. Trying to head the need off at the pass so to speak.

I'm glad you're feeling so upbeat about this. I "hope" it works out to be this, of course not because I want something wrong with her, but because a real diagnosis can give you some peace of mind and a direction to go. I know I was so glad when we found an SLP who could help us and we hadn't been struggling for an answer anywhere near as long or as hard as you have been.
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#15 of 15 Old 12-14-2006, 01:47 AM - Thread Starter
 
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I don't know if you've tried this, but I just wanted to suggest maybe trying brushing or spinning or a weighted blanket to give her some serious sensory input and to lessen her need to seek it out through putting stuff in her mouth. Trying to head the need off at the pass so to speak.
She actually has a neoprene vest at school - it fits snugly and is to give her more input. The teacher and I today discussed if we should get one for home use or not (she's going to check with the PT.) The OT got her a chewy tube to wear in around in class when she's feeling extra mouthy. I'm getting the cart cover back out b/c today she was in the grocery cart trying to chew on the side....ewwwwwwwwwwwwwwwwwwwwww!!!!

Quote:
I'm glad you're feeling so upbeat about this. I "hope" it works out to be this, of course not because I want something wrong with her, but because a real diagnosis can give you some peace of mind and a direction to go.
I know it's weird to be hopeful that this could be what's wrong - but after spending the past few weeks wading through chromosomal disorders and wondering if that's what was causing all her issues, well, this would be a much nicer diagnosis. Plus, we've confirmed that she has something off iwth her, we just need a name for it now beside's Maura Syndrome (delayed yet obnoxiously cute ) And to have a name for it to give to people instead of "We don't know what's wrong." And yes, direction! We're doing what we think she needs, but don't truly know if this is all or if she needs more. A diagnosis can tell us what's needed hopefully.
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