Walking toe to heel instead of heel to toe- Update

[queenie]

My dd is 8. I have just recently noticed when she was running that she was landing toe to heel and she is leaning really far forward. When she is just walking at reg speed it is not as noticeable but when fast walking or running it is very clear that her toe hits first. I don't know how I have never noticed this. She is very very tall for her age and is somewhat clumsy. She is developmentally behind in large motor skills but I just thought that she would outgrow it but now I feel like she should be evaluated but not sure where to start. Any ideas would be greatly appreciated!

 

Update: Our dr. sent us to an OT for an evaluation and we met with her today to discuss what they found. They said that my dd is behind mainly in gross motor skills but also a little in fine motor skills. With the testing they did she was at 4% compared with her peers. The main things they noted were that she doesn't seem to have an awareness of where she is in space, her balance was off, weak upper body and core. With fine motor skills she has weak hand muscles and her pencil grip was off. They recommended that we start doing therapy 1 x/week for an hour and they are also giving us at home things to work on. It is a play based facility and she absolutely loved it. They were so nice and helpful but I don't know anything about OT so I don't really have anything to compare it too. They did not mention dyspraxia but I couldn't think of the name of it to specifically ask. Thanks again everyone for the great advice!!

[Snickerdoodle]

Watch this and see what you think.

 

And This

[Pod's mum]

I remembered hearing it may be a sign of cerebral palsy.

Following is a quote from this site...  http://orthopedics.about.com/od/pediatricorthopedics/p/Toe-Walking-In-Children.htm

 

It does say most toe walkers have no reason to do so.

 

"Children who toe walk beyond age two may be evaluated to ensure they do not have any other condition that may cause toe walking. Toe walking beyond this age is not considered normal.

Conditions That Cause Toe Walking:

There are several conditions that can be first diagnosed by persistent toe walking. This is not to say that children who toe walk beyond the age of two definitely have one of these conditions. In fact, most toe walkers are considered idiopathic, meaning no underlying condition can be identified. But children who do continue to toe walk should be evaluated for developmental or neurologic disorders.

Some conditions that can cause toe walking include cerebral palsy, Duschenne muscular dystrophy, and autism."

 

Probaly worth an evaluation given the rest that you've noticed.

I'll let others with real experience chime in.

 

[queenie]

Thanks! All good info. It's weird though because she doesn't walk on her toes they just hit the floor before her heel and only noticeably so when she walks with speed. She is never on her toes for any length of time. Does that make sense? Not sure if I am explaining this very well. When I asked her if she could walk heel to toe she was able to do it on the first step but couldn't do it without stopping to think about it on the next step.

[geodob]

Your DD could possibly have what is called a 'retained Plantar Reflex'. Which is a foot reflex that we are born, and typically a baby develops the ability to inhibit this reflex.

Though it can also be retained, 

But it is something that you could do a very simple test of yourself, to see whether it is an issue or not?

Here's a link to a site that provides a simple explanation of how to do the test yourself:

http://hughwilliamson.hubpages.com/hub/Neurological-Diseases-Can-be-Found-With-a-Simple-Five-Second-Test

 

(It is also called the Babinski Reflex, after the person who recognized it)

[PeterPan]

What you're wanting is an OT (occupational therapy) eval.  

 

Btw, the LC/SN board is a good place to come talk about this.  There are some people dealing with cp, OT, etc., so they can help you. :)

[Alessandra]

Toe walking can occur with developmental delays; toe walking is common in children on the autism spectrum. Not diagnosing your dd!!!! just saying there are a lot of causes of toe walking. But (unless there is some serious physical cause), toe walking can probably be fixed -- gradually -- by exercises designed to stretch out the calf muscles.

 

Here are some exercises from my dc's physical therapist. 

[Well, I had an image of a document, but I got a message that I am not allowed to attach an image????? -- will try later]

 

It was a series of exercises that included:

 

-- squats

-- putting one leg in front of other and beding front leg, while stretching back leg (runner's stretch)

-- toe touches

-- 'head and shoulders, knees & toes'

-- sit with legs straight and touch toes

-- sit with legs straight and uses stretch band to pull toes forward

-- stand on stairs with toes and put weight on heels

 

Stretching works best with warm muscles. After a bath is ideal.

[PeterPan]

What Alessandra said is also why you need to GET EVALS.  It is treatable, but you need to make sure you know what's going on and the extent of it.  There are more than a few people on the LC/SN board who waited on evals who now kick themselves.  Don't treat it yourself. (I know that's not what Aless. meant; she was just being helpful and informative.)  A good OT will give you homework and also screen for spectrum, check for retained primitive reflexes, etc. and refer you off if you need other evals.  She may need a neurologist eval or other things worked on as well.  She may be low tone or have other things going on you don't realize.  Don't just treat it at home.  Get the evals so you know what's going on.

[queenie]

Thanks everyone so much. Made an appt. with her ped. for next wed. so we can get a referral.

[GoVanGogh]

DS has cerebral palsy with retained reflex mentioned above and has an unusual foot strike. Our pediatricians never noticed it. (Though they also missed the CP, because DS has a rare variation and ped was an idiot. Sorry for that mini rant.)

I would get a PT eval. Our OT noticed the foot strike but requested a PT eval, which led to the CP diagnosis.

[queenie]

DS has cerebral palsy with retained reflex mentioned above and has an unusual foot strike. Our pediatricians never noticed it. (Though they also missed the CP, because DS has a rare variation and ped was an idiot. Sorry for that mini rant.)

I would get a PT eval. Our OT noticed the foot strike but requested a PT eval, which led to the CP diagnosis.

 

How old was your ds when diagnosed?

[mommymilkies]

Toe walking is different than toe running.  Striking with the forefoot/toe or midfoot is actually a much safer way to run as it causes less damage.  Many people run that way.  So before you worry about something severe, take that into consideration. I've always been a sprinter/forefoot strike girl, myself.  I'm also very clumsy-they even tested me for bleeding disorders because I'm always so bruised. There's nothing organic there.  It's normal. 

 

http://well.blogs.nytimes.com/2013/10/16/pounding-pavement-by-heel-or-toe/

 

http://barefootrunning.fas.harvard.edu/4BiomechanicsofFootStrike.html

[GoVanGogh]

How old was your ds when diagnosed?

Eleven

He went through our stare's early intervention as a toddler and we were told he didn't have enough developmental delays for CP to be a possibility.

He hit early milestones, but started missing large motor developmental milestones around age six, seven.

 

Like PP said, if it is just with running, I would not worry. (Though would still have a doctor look at it.). But you said she does it while walking fast and she appears to be behind in large motor skills. I would get an eval. Just from my experience. Our peds told us not to worry for years.

[Alessandra]

What Alessandra said is also why you need to GET EVALS.  It is treatable, but you need to make sure you know what's going on and the extent of it.  There are more than a few people on the LC/SN board who waited on evals who now kick themselves.  Don't treat it yourself. (I know that's not what Aless. meant; she was just being helpful and informative.)  A good OT will give you homework and also screen for spectrum, check for retained primitive reflexes, etc. and refer you off if you need other evals.  She may need a neurologist eval or other things worked on as well.  She may be low tone or have other things going on you don't realize.  Don't just treat it at home.  Get the evals so you know what's going on.

 

Exactly. As Elizabeth said, an evaluation will help you understand what is unique to your child and what will help your child improve. If your child's issues are serious enough, she may qualify for therapy with a PT, either private/insurance-based or school based. If the issues are not enough to qualify for therapy, you can ask for a home program designed for your child and then return for periodic evaluations.

 

Money aside, evaluations are positive. My pediatrician often advised evals from more than one type of professional, as professionals from different fields will have varying takes on what the issues are and how to remediate.

[Tiramisu]

When my dd started toe walking, our pediatrician dismissed it but there was a reason for it that needed to be addressed. She was diagnosed by an orthopedist with a spine issue that was correctable. Based on our experience, I wouldn't ignore it. I don't think there's a need to be worried but it's better to have it looked at by a specialist.

[AmandaVT]

She's not a gymnast by any chance is she?

[queenie]

She recently started taking gymnastics but I noticed this right before she started. I said she was behind in gross motor skills but how do you know for sure? I am basing it off of watching her around other kids her age. For example in the homeschool gymnastics class they split the class into older and younger and she gets put with the 5-6 year olds because of her skill level. She is very weak in her upper body. For example she was the only one in her class who couldn't do the crab walk but she is also very tall and solid as a rock so she weighs more than most kids her age. Any sport or physical activity she has ever done even as a little one she comes in last. She has trouble tying her shoe too. I am totally fine if she isn't athletic but I just want to make sure nothing is wrong!

[mommymilkies]

She recently started taking gymnastics but I noticed this right before she started. I said she was behind in gross motor skills but how do you know for sure? I am basing it off of watching her around other kids her age. For example in the homeschool gymnastics class they split the class into older and younger and she gets put with the 5-6 year olds because of her skill level. She is very weak in her upper body. For example she was the only one in her class who couldn't do the crab walk but she is also very tall and solid as a rock so she weighs more than most kids her age. Any sport or physical activity she has ever done even as a little one she comes in last. She has trouble tying her shoe too. I am totally fine if she isn't athletic but I just want to make sure nothing is wrong!

Some kids just aren't athletic.  However, based on the other issues (shoes, crab walking, etc.) I would have her evaluated by an OT or PT. 

[Tiramisu]

I really don't want to confuse these issues (clumsiness and toe running) because they could have different causes, but they could also be related. Whatever it is, I don't think the clumsiness is something to completely brush off. There can be medical reasons for it but sometimes it can just be developmental. It's nothing to be alarmed about, but there may be things you can do to help, like OT for example. You can't help without starting to look into it.

 

I told you about my one dd in my previous post in this thread, but I have an another dd who was also a bit clumsy, nothing remarkable but she would tend to bump into things and fall up stairs and things like that. Before she went off to college I decided to get a full evaluation with a neuropsychologist which revealed some things directly related to the cause of the clumsiness that had an influence on her academics but I was never aware of them. The impact was substantial enough that the report recommended an accommodation of extra time because these things slowed her down and prevented her from reaching her academic potential. 

 

You may want to google dyspraxia. Like I said, it may be unrelated to the toe running, but it could be related. But that's a second step. I'd follow up on the toe running first, but definitely mention the clumsiness to the doctor.

[GoVanGogh]

She recently started taking gymnastics but I noticed this right before she started. I said she was behind in gross motor skills but how do you know for sure? I am basing it off of watching her around other kids her age. For example in the homeschool gymnastics class they split the class into older and younger and she gets put with the 5-6 year olds because of her skill level. She is very weak in her upper body. For example she was the only one in her class who couldn't do the crab walk but she is also very tall and solid as a rock so she weighs more than most kids her age. Any sport or physical activity she has ever done even as a little one she comes in last. She has trouble tying her shoe too. I am totally fine if she isn't athletic but I just want to make sure nothing is wrong!

Well, I am a poor judge because I wasn't aware my DS was so far behind in gross motor skills. He mountain bikes, swims, plays a number of sports, etc. But in all things he was just a bit off.

Examples:

He mountain bikes but has a problem with sudden corrections, like going around a bend and realizing there is something blocking his path. He will always wipe out. (We now know he can't make small, controlled movements)

He took swimming lessons for seven years and loves the water but has never been able to put together the parts to actually swim properly. Looking back over video (now knowing his diagnosis) from years of swim lessons, he actually drags one arm. I never had a single swim instructor say anything to me about it being a concern.

DH and I are neither one overly athletic (we run and bike, but not in to team sports) so it was easy to dismiss DS not being terribly coordinated.

I remember at one point telling my mom about DS struggling with swim and she said I was expecting him to be perfect with every sport he tried. No. I just felt that as much as DS loved swimming and really tried hard, he should be a bit better at it than what he was.

 

Dyspraxia was mentioned above. DS has that as a sub-diagnosis. You can also look up the term developmental coordination delay.

I am not sure how it relates to other diagnosis, but in DS's case it goes with retained reflexes and not having an awareness of where his body is in space. It very much relates to academics, as it affects the physical aspects of writing. Not something to be overlooked, as the issues are magnified the older the child gets. There is a 16-year-old girl at our therapy facility right now, diagnosed with dyspraxia after she couldn't pass the driving portion for her driving license. I don't share that to scare, but just to show that IF there is an issue, it doesn't just go away. That is why evals are valuable. Pediatricians, I have found, do not understand this. Our ped told me for years not to worry about DS not being able to sit or write, "just put him on a computer, penmanship is overrated."

 

I also didn't share DS's diagnosis to worry you. (Or anyone else reading.) We have really been shocked that pediatricians are not trained in developmental issues beyond infancy, nor are they trained to catch movement disorders. We are in an urban area with two wonderful children's hospitals (we are at one now), but we have been unable to find a single pediatrician that looks at retained reflexes past the first year, nor do they understand the impact. I had one ped exam my DS and say repeatedly, "I have never seen that retained reflex past nine months of age." We'll, here is my kid - 11 at the time- exhibiting it and the doctor said he didn't have the first clue what it meant. (CP)

[Alessandra]

We HAVE a pediatrician who is tuned into developmental needs and recommends evals right away. We HAD a ped who liked to talk about how all kids develop at their own pace, etc.

 

Ped #2 helped.

 

(Not quoting, on phone, but referring to post above.)

[PeterPan]

Yes, you could very well have some low muscle tone and motor planning issues going on.  Takes work to sort it out.  The ped can identify the low tone for you, but I think GVG has some stories about it being scattered and deceptive (places of low tone, places of *hyper*tonicity).  My dd didn't tie her own shoes for years, and she does have issues with motor planning and imitation (didn't get a dyspraxia label, but there's still some of it) and she had some visual memory issues.  Until you dig in, you don't really know what or what combo of things is causing something.  

 

Let us know how it goes and what you find out!  :)

[Rachel]

I run on my toes when I sprint, it is not uncommon for sprinters. I don't have advice about whether she should be evaluated, but my high school track coach did encourage me to run that way. Now that I run longer distances I have learned how to run with a more normal toe strike.

[queenie]

Update in original post:)

[PeterPan]

Are they going to do a full write-up of the results so you have the right words for these things and formal diagnostic terms and codes? You'll want that paperwork to take to a psych later if you end up doing a psych eval.  If she needs accommodations for handwriting on tests in high school, you'll want the paper trail.  

 

-body in space=proprioception

-balance=vestibular

-weak core=probably they're saying she's low tone, not just that she's weak.  Strength and tone are two separate things.  You can be low tone but very strong, etc.  

 

Definitely do whatever homework they give you.

 

So you're going to take the results to a ped and get a referral to find out what's underlying the low tone and motor delays?  With the toe-walking, I still go back to that question of CP and spectrum.  It is NOT unheard of for things to get missed, so DON'T stop with just one person.  Double check EVERYTHING.  I'd be wanting to know *why* she's low tone and has all these delays and motor issues and the toe-walking.  Did they answer that?  My kids are low tone and I'm low tone.  Depending on who you talk to, they'd like to refer us to a neurologist for some prodding to find out what underlies it.  There's this blanket term "benign congenital hypotonia" that is probably our deal (mine, my kids') and it's connected to mitochondrial disorders.  But toe-walking is NOT part of that.  So I'd encourage you to keep asking till you get actual explanations.  Sometimes it's not the first OT who sorts out everything.  Things get missed.  Look at posts by GoVanGogh here on the boards.  Her boy had a really unusual presentation of CP and it got missed a LOT longer than it should have.  Did they screen for retained primitive reflexes?  

[dereksurfs]

Toe walking is different than toe running.  Striking with the forefoot/toe or midfoot is actually a much safer way to run as it causes less damage.  Many people run that way.  So before you worry about something severe, take that into consideration. I've always been a sprinter/forefoot strike girl, myself.  I'm also very clumsy-they even tested me for bleeding disorders because I'm always so bruised. There's nothing organic there.  It's normal. 

 

http://well.blogs.nytimes.com/2013/10/16/pounding-pavement-by-heel-or-toe/

 

http://barefootrunning.fas.harvard.edu/4BiomechanicsofFootStrike.html

 

 

Yes, it's sounds like there are two distinct issues being described here.  As for 'toe running' I have been working on improving my gate and overall posture.  It has really helped my running in taking a more forefoot approach.  There are running clinics which focus on developing a healthier toe to mid foot vs. heel strike also demonstrated in post #2.  My son has a natural forefoot strike when he runs which I am envious of.  

 

Obviously in this case there are other issues involved.  So it is good to get proper evals (PT/OT), treatment as you have along with potential diagnoses. Hopefully in the process though they won't try to *fix* her running gate to a heel strike which is considered 'normal' by some medical professionals.  The benefits of forefoot running are many and somewhat of a new discovery which many medical professionals are unaware of or simply do not recognize.  

[queenie]

More great advice!! They did give us a formal write up yesterday but under diagnosis it just has a number and Lack of Coordination. I reread over the report (3 pages)and it doesn't mention low tone anywhere. We did ask about the cause of the delays and she didn't really give an answer for that.  I already have an appt. set up in early Jan. to go back to the ped. but it looks like I also need to ask more questions from the OT. I found out about this particular OT after posting on a local message board and this is the place almost everyone recommended. Also, what is the psych eval. for? Is that something the ped. will let me know if we need? Trying not to feel overwhelmed by it all!!!

[Tiramisu]

More great advice!! They did give us a formal write up yesterday but under diagnosis it just has a number and Lack of Coordination. I reread over the report (3 pages)and it doesn't mention low tone anywhere. We did ask about the cause of the delays and she didn't really give an answer for that.  I already have an appt. set up in early Jan. to go back to the ped. but it looks like I also need to ask more questions from the OT. I found out about this particular OT after posting on a local message board and this is the place almost everyone recommended. Also, what is the psych eval. for? Is that something the ped. will let me know if we need? Trying not to feel overwhelmed by it all!!!

 

As far as what will appear on the report, I think certain specialists can only dx certain things, So "lack of coordination" in the report along with the other things that you mention, sounds exactly like dyspraxia. As OhE said, it is worth following up on why. I agree that it's worth finding a good pediatric neurologist. *I wouldn't worry that it's progressive at all,* but you should still investigate it.

 

To answer your question, I would doubt that a ped would recommend a neuropsychological eval. A neuropsychological eval is to assess someone's strengths and weaknesses in terms of cognitive function and learning. A ped usually wouldn't think of it, because it's not their sphere of expertise. The reason why it's important, especially now that the coordination problem is certain, is because it will impact her academics and you'll want to know how it's impacting and how much, so you know what to work on and how and get the documentation you'll need for the future. If you google dyspraxia, you will see that the effects can be extensive in regards to learning. You will likely face speed issues, which could affect writing and math, as the years go on and the work gets harder.

 

I don't mean for this to sound depressing because it shouldn't be. Everyone in the world has something, in one way or another. But you are one step ahead in that you are figuring it out and already getting help. You'll want to stay on top of it in terms of understanding the difficulties it could create so you can wisely choose what to work on, what to accommodate, and, most of all recognize and appreciate that dyspraxia can simply make normal things harder because it will take more effort to do normal stuff. Your attitude and support when, and of course *if* she ever faces that stress, will be crucial. 

 

I'd also inquire about getting a vision evaluation from a covd.org developmental optometrist because dyspraxia can affect eye motor coordination as well and there are effective therapies for it.

[PeterPan]

More great advice!! They did give us a formal write up yesterday but under diagnosis it just has a number and Lack of Coordination. I reread over the report (3 pages)and it doesn't mention low tone anywhere. We did ask about the cause of the delays and she didn't really give an answer for that.  I already have an appt. set up in early Jan. to go back to the ped. but it looks like I also need to ask more questions from the OT. I found out about this particular OT after posting on a local message board and this is the place almost everyone recommended. Also, what is the psych eval. for? Is that something the ped. will let me know if we need? Trying not to feel overwhelmed by it all!!!

Google that number.  It should be in the DSM.  Here's the link so you can search for yourself.  http://www.dsm5.org/Pages/Default.aspx  When you have the right label, that gives you the power to research for yourself and make sure you're receiving optimal treatment and addressing all the issues.  When you just trust them to figure it all out for you, you become their cash cow.  And if, a year down the road, you realize they didn't address everything and you still have concerns, you'll kick yourself.  The best way is to jump in and learn how it works.  The codes are diagnostic codes for insurance purposes, and they should be in the DSM.  The DSM recently changed, so you want to make sure the codes are current.  Sometimes they actually change the labels for things, if you can imagine.

 

Lack of Coordination is not currently in the DSM 5, at least not when I googled it on their site.

 

The psych eval I mentioned would be for down the road.  If she's having motor planning issues, she may get a dysgraphia label or need accommodations for testing, etc.  If she has CP, there can be some brain areas affected. (things a neuropsych would eval for) Sometimes things are going on that you just think are them and haven't connected the dots on.  So I was just putting that on your radar, not saying you need to go right now.  Nobody likes to think about accommodations, but your dd is young.  The disabilities and issues are easy to cover over or compensate for when she's young.  Get that same dc at 15 or 16 and she might need the accommodations for all she is inside to come out.  It's just one of those things to be an advocate for.

 

Back to the diagnosis.  DCD (developmental coordination disorder) *is* in the DSM.  Check the codes and see what she put.  If she has DCD, absolutely she's going to end up needing a neuropsych eval.  Yes I would get her vision eval'd by a developmental optometrist.  The eyes move with muscles, so the same issues affecting the rest of her can affect her developmental vision.  Also, with the psych eval, you'll probably find more things you can work on.  You'd rather know earlier than later.  

 

Because DCD and CP overlap, you want to make sure things aren't getting missed.  Don't assume anything.  You are the advocate and the only one standing in the gap to make sure everything gets covered.  The way the medical system works, care is pretty pigeon-holed.  The OT checks something and refers off for everything else.  The neuropsych checks something but refers off for the rest.  The eye doc checks things and refers off for the rest.  They're only looking at pieces.  YOU are the one left to coordinate all that and see what pieces didn't get dealt with, whether you need to see another person.  I'd still be concerned about that toe-walking.  I also go back to my question about whether the OT screened for retained primitive reflexes.

 

Btw, I hate to make you cry, but this is about the time you need to read this.   :grouphug: 

 

 

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

[PeterPan]

Well, I am a poor judge because I wasn't aware my DS was so far behind in gross motor skills. He mountain bikes, swims, plays a number of sports, etc. But in all things he was just a bit off.

Examples:

He mountain bikes but has a problem with sudden corrections, like going around a bend and realizing there is something blocking his path. He will always wipe out. (We now know he can't make small, controlled movements)

He took swimming lessons for seven years and loves the water but has never been able to put together the parts to actually swim properly. Looking back over video (now knowing his diagnosis) from years of swim lessons, he actually drags one arm. I never had a single swim instructor say anything to me about it being a concern.

DH and I are neither one overly athletic (we run and bike, but not in to team sports) so it was easy to dismiss DS not being terribly coordinated.

I remember at one point telling my mom about DS struggling with swim and she said I was expecting him to be perfect with every sport he tried. No. I just felt that as much as DS loved swimming and really tried hard, he should be a bit better at it than what he was.

 

Dyspraxia was mentioned above. DS has that as a sub-diagnosis. You can also look up the term developmental coordination delay.

I am not sure how it relates to other diagnosis, but in DS's case it goes with retained reflexes and not having an awareness of where his body is in space. It very much relates to academics, as it affects the physical aspects of writing. Not something to be overlooked, as the issues are magnified the older the child gets. There is a 16-year-old girl at our therapy facility right now, diagnosed with dyspraxia after she couldn't pass the driving portion for her driving license. I don't share that to scare, but just to show that IF there is an issue, it doesn't just go away. That is why evals are valuable. Pediatricians, I have found, do not understand this. Our ped told me for years not to worry about DS not being able to sit or write, "just put him on a computer, penmanship is overrated."

 

I also didn't share DS's diagnosis to worry you. (Or anyone else reading.) We have really been shocked that pediatricians are not trained in developmental issues beyond infancy, nor are they trained to catch movement disorders. We are in an urban area with two wonderful children's hospitals (we are at one now), but we have been unable to find a single pediatrician that looks at retained reflexes past the first year, nor do they understand the impact. I had one ped exam my DS and say repeatedly, "I have never seen that retained reflex past nine months of age." We'll, here is my kid - 11 at the time- exhibiting it and the doctor said he didn't have the first clue what it meant. (CP)

I just wanted to pull this back down to let you read GVG's wisdom, now that you've started the diagnosis process.  Notice what she's saying, that she got eval after eval, and people were missing things, accounting for some of the symptoms but not all.  

[Tiramisu]

I think dyspraxia (developmental vs. acquired) is called developmental coordination disorder in the DSM, as OhE mentions. There may technically be differences but our np used them interchangeably. On websites, you'll sometimes see "also called....". I don't know if it's something an OT can officially diagnose. I'm wondering about this since we had these issues and the OT emphasized something else in the report, and I thought it had to do with insurance coverage. It would be interesting to know what the code means.

[srs]

I am chiming in as another CP mom, whose child also got a late diagnosis... I didn't see if GoVanGogh addressed this, but just to clarify, my understanding is that toe walking would be a sign of hypertonia, or high tone, which is the most common presentation for CP, not hypotonia, or low tone, which was discussed upthread.

 

And a hug to you, OP, because I know this is a lot to take in, particularly for an older child.

[GoVanGogh]

I am chiming in as another CP mom, whose child also got a late diagnosis... I didn't see if GoVanGogh addressed this, but just to clarify, my understanding is that toe walking would be a sign of hypertonia, or high tone, which is the most common presentation for CP, not hypotonia, or low tone, which was discussed upthread.

 

And a hug to you, OP, because I know this is a lot to take in, particularly for an older child.

 

Yes, that is my understanding of toe walking and high tone, as well.

You can have mixed tone, too, within one muscle group (dystonia) or from one muscle group to the next.

It gets very complicated at that point and - from what I have heard - you can have ten neurologists look at the same child and all come back with slightly different thoughts on the patient's muscle tone presentation.

We felt very fortunate earlier this year that two specialists examined our son in back-to-back appointments and both came back, line by line and independent of each other, with the same conclusion. It gave us great peace of mind that we finally had the correct diagnosis.

 

 

Re: Dyspraxia

My understanding is that it is called dyspraxia in the UK but developmental coordination delay in the US.

I have found more information regarding this (and retained primitive reflexes) from sources out of the UK and Australia.

I don't know how the US stands in terms of research or overall understanding. I do know that I am horribly shocked and saddened by the lack of knowledge among pediatricians in the US regarding muscle tone issues, developmeal issues/primitive reflexes and CP. Part of the reason my husband and I have decided to go public with our stuggles is in hopes of educating pediatricians and other parents.

 

[GoVanGogh]

I just wanted to pull this back down to let you read GVG's wisdom, now that you've started the diagnosis process.  Notice what she's saying, that she got eval after eval, and people were missing things, accounting for some of the symptoms but not all.  

 

There is a list of things that are needed to be present for an official CP diagnosis. I was just looking on-line and can't find a good resource now. (Think I have it in a book.)

CP basically means - a brain issue at or near time of birth that results in a neuromuscular movements disorder.

Brain issue can be anything from a stroke to a brain bleed (common in preemies) to an underdeveloped cerebellum. (What my son has.)

Neuromuscular movement issue can be high (spastic) tone, low tone, mixed tone or any combination of.

Other medical issues that can go into the CP diagnosis are: uneven leg length, variation in muscle tone from one side to the other, retained primitive reflexes, etc.

 

When the neurologists went down the list, my child had each and every one of the things that must be present for the diagnosis, plus a few of the "and the child may also have..." symptoms.

But - when you read about CP, everything will say, "The child will miss developmental milestones..." or "Missed milestones are the biggest indication of CP..." In our case, our son never missed any early milestone. In fact, he met them very early, like walking before 9 months of age. The specialists are now telling us that DS's high tone areas were perfectly placed to offset the low tone areas and the high tone allowed him to meet his early developmental milestons very early. He didn't actually start missing milestones until around age five or six, past the age that pediatricians look for.

 

Our son went through extensive OT, PT and speech screening (through state's early childhood intervention program) at age 2, to see if there were enough developmental issues to warrant a referral to a neurologist. The therapists said he was too advanced in fine and gross motor skills to be CP, though he did qualify for speech. We now are told that this form of CP can't be diagnosed until age 3-4. (Though DS did have tremors, which should have been an automatic referral to a neuro. Our ped said he had outgrown around age 2. Therapsist today have identified several ways DS hides or masks his tremors. I have pictures as young as 18 months of him employing methods therapists say are masking tremors.) 

 

The medical file I have now compiled for my son is several inches thick. I have taken it to many specialists and therapists. (Including: I attended a neuroscience conference and took his medical files and talked to everyone I could.) Every specialist and therapist that has looked at it has said that it is riddled with red flags - didn't start nursing until 7 weeks of age, baby teeth came in without enamel, rolled over at an insanely early age, constantly moves while sleeping, falls out of chair often, eye surgery, umbilical hernia surgery, sensory processing diagnosed at age 2, oral aversion diagnosed at 3 weeks of age, etc. 

I have taken the same records to pediatricians - along with the multiple OT and PT evaluations - and the pediatricians don't have a clue. They don't even realize that strabismus eye surgery and umbilical hernia surgey are indications of a core of low tone, though the first neurologist we went to was so convinced this was common knowledge she used this as the basis for charging DH and I with medical negligence.

 

Again, if you look at DS, it isn't obvious he has CP or that he is anything other than slightly uncoordinated. But when you look at it and know all the pieces - the way he holds his pinky fingers, the way his right hand tightens when his left hand crosses midline, the way his right arm hangs when he runs, the way he drifts to the right when he walks.

[queenie]

Thanks so much everyone for sharing your stories and your knowledge! It has been incredibly helpful!!! I called the therapist back and left a message so I could ask for further detail and I have compiled a list based off your posts :thumbup1: I also am going to make an appt. with the developmental optometrist. I was so happy to find that we have one about 10 min. from our house! I am wondering if I should just cancel our appt. with the pediatrician. Sounds like it might be a waste of time. Also, I checked the DSM and could not find the code but and when I googled it  I still couldn't find anything I could understand.

[srs]

Queenie, about canceling, you might want to hold off because most things will need to be officially diagnosed by a doctor. Not likely the regular pediatrician, but they may refer you on. I can relate to GoVanGogh's post: We went through the regular ped, who sent us to OT, who sent us to PT, who sent us to developmental pediatrics, then genetics, then neurology, where our wonderful doctor took two minutes to hear my atypical pregnancy story and ordered a brain MRI. But she still didn't diagnose CP, that was the job of the developmental pediatrician, who we returned to when we got the MRI results.

 

And all this for a child most would pass on the street without realizing that anything major is wrong. So as much as I dislike dragging my child and myself to doctors (we are at an out of town hospital for medical care this week), sometimes it really does take a bunch of appointments and some dead ends to figure things out.

[PeterPan]

Queenie, our ped is a newer doc, and when I asked him to look at ds' tone he was actually very careful to look at a number of places. Depending on what the doc is like, you might get the Worried Mother routine where they act like you're just reading online and getting inflamed and worried about things.  ALL YOU'RE ASKING FOR is a complete explanation of the symptoms.  DCD (if that's the label the OT used) doesn't explain the toe-walking and doesn't tell you if she was careful to look for mixed tone.  All you want is to make sure you've gotten everything.  Obviously you have more specific things you want, but I'm just saying there IS a rational for this, to have a complete explanation, and you shouldn't let them blow you off.

 

OT's vary in quality.  Dev. optometrists can also vary.  Please take a bit and check out this doc before you go in.  You don't want to have to do it again if you find you don't like this one.  Ask for some referrals or see if you can meet the doc first our tour their office.  Call up three or four (or more) places from the COVD list and compare them.  Also, I don't mean to make you freaky, but go ahead and ask how much per 1/2 hour or hour vision therapy runs with them, who does it (the doc or a certified therapist), etc.  Sometimes you'll find a big spread, and if for some reason she did need VT at some point, you don't want to be attached to a doc that is so expensive you can't afford him if a less expensive one is a bit further drive.  So take your time, slow down.  This doesn't have to be a super rush. I'd do that eye appointment in January and enjoy your holidays.   :)

[GoVanGogh]

Queenie, about canceling, you might want to hold off because most things will need to be officially diagnosed by a doctor. Not likely the regular pediatrician, but they may refer you on. I can relate to GoVanGogh's post: We went through the regular ped, who sent us to OT, who sent us to PT, who sent us to developmental pediatrics, then genetics, then neurology, where our wonderful doctor took two minutes to hear my atypical pregnancy story and ordered a brain MRI. But she still didn't diagnose CP, that was the job of the developmental pediatrician, who we returned to when we got the MRI results.

 

And all this for a child most would pass on the street without realizing that anything major is wrong. So as much as I dislike dragging my child and myself to doctors (we are at an out of town hospital for medical care this week), sometimes it really does take a bunch of appointments and some dead ends to figure things out.

I wouldn't cancel the ped appointment yet, especially if you have a long relationship with this doctor.

I would just know going in that you may need to be forceful with your questions and requests for referrals - and do your own research before and after appointments.

I am still hopeful that there are pediatricians out there that have kept up with the changes within the neurosciences over the past decade. (Of all things, my son's allergist has a side interest in neurology and has been extremely helpful to us.)

Two of our worse doctor appointments actually ended up being the most helpful ones overall. One finally got us the MRI. The second answered my biggest question of "How has this been missed when we kept asking about xyz?"

We are still looking for a new pediatrician and I have decided I want to find the youngest, freshest out of med school we can get.

 

Queenie, our ped is a newer doc, and when I asked him to look at ds' tone he was actually very careful to look at a number of places. Depending on what the doc is like, you might get the Worried Mother routine where they act like you're just reading online and getting inflamed and worried about things.  ALL YOU'RE ASKING FOR is a complete explanation of the symptoms.  DCD (if that's the label the OT used) doesn't explain the toe-walking and doesn't tell you if she was careful to look for mixed tone.  All you want is to make sure you've gotten everything.  Obviously you have more specific things you want, but I'm just saying there IS a rational for this, to have a complete explanation, and you shouldn't let them blow you off.

 

OT's vary in quality.  Dev. optometrists can also vary.  Please take a bit and check out this doc before you go in.  You don't want to have to do it again if you find you don't like this one.  Ask for some referrals or see if you can meet the doc first our tour their office.  Call up three or four (or more) places from the COVD list and compare them.  Also, I don't mean to make you freaky, but go ahead and ask how much per 1/2 hour or hour vision therapy runs with them, who does it (the doc or a certified therapist), etc.  Sometimes you'll find a big spread, and if for some reason she did need VT at some point, you don't want to be attached to a doc that is so expensive you can't afford him if a less expensive one is a bit further drive.  So take your time, slow down.  This doesn't have to be a super rush. I'd do that eye appointment in January and enjoy your holidays.   :)

Re: Big spread

We were so thankful to get the first referral to an OT that we didn't ask questions. We were familiar with the facility we were referred to, as it was linked to the hospital system we used and liked. When we realized we were in therapry for the long-haul, we decided to start looking for a location closer to home. I was shocked at the difference in price. $275 for 45 minutes vs $150 for an hour. (Prices with our insurance) We went with the second place, though it didn't end up being any closer to home. But the facility is a better fit for our family. (The first place was more for younger children and they often didn't have equipment big enough for my tall pre-teen age child.)

[srs]

We also just switched OT and PT to a more affordable place, because outpatient at the hospital was exceeding the maximum amount covered by insurance. And the therapists are just as good, and the rates insanely less. Shop around!