Lack of physical strength/regulation?

[Jenn in CA]

This isn't really a learning challenge but maybe someone has some experience w/this. 7yodd is "floppy." I suspect she lacks core strength. She was very malnourished until age 2.5, and raised in poverty by her very old great-grandmother, so I'm guessing she probably lay on the ground or was held a lot of the time. She's had PT, she was evaluated last fall and was in the normal range for everything. She's a super-hard worker and, for ex, did 10 real push-ups for the test! But, when she's just in normal life, she doesn't seem to activate her core.

 

She slumps something terrible. She will pull the bench way under the table, so her bottom is under the table, and put her chin over her plate, when eating. Somehow, pushing the bench out and leaning forward isn't comfortable (although I always make her do it).

 

She doesn't just lean her head on my shoulder, she puts her entire weight on me and can knock me over.

 

Yet, at the same time, she's got this light touch and weak grip. She doesn't open up her web space when writing/using utensils (unless I tell her to). She was using a pen w/a cap, and did not/could not put the lid on all the way. I don't think she noticed that it had to "click" to be all the way on. She has trouble regulating her touch/grip. She had a lego model and every single time she picked it up to carry it upstairs, she dropped it, as if she couldn't hold it just the right tightness to not break it. Can opener is difficult, her cleaning chores (wiping mirrors and cabinets) are tiring.

 

Also super-fidgety. Always, always moving, swinging legs around, upside down on head. When she runs, her head bobs up and down/side to side. To me, it's not a natural motion. 

 

Sorry about the length here. My concern is that she has all these terrible habits that she's fallen into, even though she may have the strength, and how do I help her form new habits? Since she was in the normal range, PT had no suggestions.

Jennifer

[PeterPan]

Sounds like it's time for some more evals, maybe OT.  Have they checked for retained reflexes and considered a dyspraxia diagnosis?  Strength and tone are not one in the same, and strength for pushups might not carry over to everything else.  Any time there are issues with strength and tone, you're going to have less proprioception.  So you could have a dominos scenario.  But really, I'd just get some fresh evals.  An OT won't diagnose the dyspraxia/DCD.  I think you need a neuropsych for that.

[maize]

Can you put her in an activity like dance, tumbling, gymnastics, or martial arts? Any of those will help her develop core strength and general body awareness and coordination.

[Jenn in CA]

OhE good point about ot.

 

Maize she's been in gym 1x/week, we just went to 2x. She's been in gym for 2 yrs. I've wondered recently if she needs more so we increased to 2.

 

I have wondered if swimming 3-5x/wk would be better.

[PeterPan]

My ds is low tone, and his core is weak (noticeably weaker than his peers) even with 5-6 hours of gymnastics and 4 days of swimming a week.  I kid you not.  And he's a competitive gymnast now!  

 

Get the evals, see what is going on, and then get homework that fits her.  That OT/PT may like a regimen, like exercises done with an exercise ball.  I was just looking at the Super Duper Fun Deck for the balance/exercise balls.  Those would be fun!  Heathermomster has had some lists too.  But really, you've got enough going on that it's time for a diagnosis.  

 

If you want to chuckle, the best way to improve core is horse riding.  

[Jenn in CA]

OhE what evals to start? Just OT? She had PT eval in the fall. Is it worth talking to pediatrician about dyspraxia?

Edited January 10, 2016 by Jenn in CA

[PeterPan]

If you're using insurance and need referrals, yes you'll talk to your ped.  Technically it's a neuropsych that diagnoses dyspraxia/DCD.  There might be others, dunno.  As far as praxis, you could look for an OT that is SIPT certified.  

 

I think the PT is the better of the two for the strength issues, but some PTs and some OTs check for retained reflexes and some don't.  So it's more just that you want it done.  You can even google and check for yourself.

[Heathermomster]

She sounds like she is low tone and needs to be doing exercises for prim reflexes, posture, static/dynamic balance, and overall strength with small weights and yoga ball. A really good pediatric PT addressed my son and DD's issues. Wheelbarrow walking is great for arm and hand strength.

Edited January 10, 2016 by Heathermomster

[PeterPan]

You asked about frequency and swimming vs. gymnastics.  Neither, by themselves, will completely address her needs.  You'll still want more OT/PT.  But of the two, gymnastics is the better sport for this.  It's more directly focused on strength.  Gymnastics will make her a stronger swimmer but the reverse is not true.  I think your 1X/week wasn't enough to get the benefits she *can* get from the gymnastics.  I would say move her up to 3 days a week and see what happens.  At our Y they have a variety of classes, so you can do gender specific classes, tumbling, cheerleading, all sorts of things.  I would go for *variety* like that.  My ds seems to need a LOT LONGER than anyone else to learn the same skills.  If you want to burn her out, don't give her enough classes to let her get good at it or see the rewards, kwim?  I would go for more.

 

The trick with the OT/PT homework is that you want them to have enough tools that they think ok, what would this dc like?  Like some kids LOVE the exercise balls and some really like resistance bands.  My ds loves his chin-up bar and will comply with anything I do with him.  Our coach gave us some core exercises where you superman fly or where you lie on your stomach and make like a bowl.  Then you can add rocking to either of those.  So there's really some thought there, like what will that particular dc enjoy and be willing to comply with.  

 

Most kids with low tone will lose the tone as soon as you stop using it.  You can also have a metabolic component.  There's some testing a geneticist can do (that I haven't done, sorry) and the option to try things like carnitine.  I'm saying you should, just that the option is there.  There are also OTs who theorize that kids who get vestibular input will retain tone from the exercises better than kids who don't.  So then you could go ok, let's add Therapeutic Listening or some vestibular input to our routine, kwim?  There are just schools of thought on that.  

[Jenn in CA]

It's helpful for me to have search terms. Thank you.

 

Is the primitive reflex thing an "alternative" view or widely accepted? It helps me to know if medical/healthcare people are gonna look at me weird before they do. :)

 

Who do I ask about low tone? PT or ped?

 

Thank you to all for not being dismissive. That is the most frustrating and I have encountered it so many times in regards to my adopted girls, who are so sunny and determined that outsiders have trouble believing me there are issues.

[Mom28GreatKids]

Most OT's know about retained reflexes. Two different ones pointed it out in my little guy. I am assuming both OT and PT can address the low tone issues. Typically, if you need a referral for insurance, you start with your pcm voicing your concerns.

[kbutton]

It's helpful for me to have search terms. Thank you.

 

Is the primitive reflex thing an "alternative" view or widely accepted? It helps me to know if medical/healthcare people are gonna look at me weird before they do. :)

 

Who do I ask about low tone? PT or ped?

 

Thank you to all for not being dismissive. That is the most frustrating and I have encountered it so many times in regards to my adopted girls, who are so sunny and determined that outsiders have trouble believing me there are issues.

 

Retained reflexes--there is a spectrum of who cares and who doesn't and who you go to in your area. We have practitioners that acknowledge reflexes here, but they won't test or work on them. They say that's the job of the x,y,z therapist. It seems like if you want reflex information where I live, you have to go to places like The Brain Balance Center or another brain integration place. The only place here that has discussed or worked on reflexes with us is vision therapy, and the changes in my kids from doing VT have been swift and significant. It was life-changing for my older son. My younger one is in VT right now and making great progress. I do not know if all VT places work on reflexes or not. 

 

Before we started VT, I did get the school OT/PT to test for them, but they do not address them at all in school, so it didn't count in the "official" assessment. The school therapists had taken a class on retained reflexes just days before evaluation my son--the timing was wild.

[Jenn in CA]

Interesting. When I did some reading and found a home test for reflexes, the cross-tapping of knees one reminded me of Dianne Craft.

[kbutton]

Interesting. When I did some reading and found a home test for reflexes, the cross-tapping of knees one reminded me of Dianne Craft.

 

I don't know much about Dianne Craft, but there are a lot of things out there about retained reflexes. Slow, gentle, consistency seems to be a common thread from people I know who've integrated them--repetitions of the exercises for days and even weeks at a time.

 

Our VT uses a progression of exercises to integrate some of them--so, the whole series is working on a reflex or two, but the tasks vary to get integration across tasks and such. They add "distractions" and tweaks to be sure the child can do tasks with that integrated reflex in a variety of contexts. It's really seen by our VT as brain training paired with OT techniques.

 

This link has a list of reflex activities and a youtube link. I just did a quick search and haven't followed it all the way. But, in borrowing reflex material from friends who have used other therapists for reflexes and in comparing that to our VT and this site, it appears that our VT uses a lot of the exercises from this site in a very carefully constructed sequence. You don't move on until you're quite good at the basic exercises. It's like a snowball effect--some things may take longer, but then the next skill or two will just fly by until you hit the next difficult bump. You MUST pause on the difficult bumps until they are pretty automatic. http://www.centerforvisionandlearning.com/index.php/resources/vision-therapy-exercises.html 

[Jenn in CA]

Well, I found a home test for RNR and she doesn't have any of those reflexes.

 

when I mentioned physical and learning issues together, the ped gave me referral for a geneticist. I have no idea what kinds of things the geneticist would look for, but at least it's something. And I got PT and OT referrals. 

 

Thanks for your help and support! I am truly grateful for the wealth of experience here.

[ziyal9]

If you have the pediatrician referral and can afford it, I would say get the genetic testing done. Your DD sounds very similar to my 7yo DS, with the slouching, weak grip and fidgeting. And he always fell in the normal physical testing ranges, as well. He was diagnosed with dyspraxia (and SPD) at 2.5 and he was 5 and had been in hippotherapy (horses) for a year already when his therapist suggested he get a full muscular workup as he didn't appear to be gaining any strength or tone. (And hippotherapy was on top of his weekly occupational therapy and gymnastics!)  

 

The testing results showed a gene duplication associated with Charcot Marie Tooth disease which affects his hands and feet and is fairly common. And explains so much of what we see from him physically. In terms of treatment, we wouldn't have done anything differently than what we had already been doing so in that regard, testing didn't help, per se. But just having a solid explanation has been beneficial in many ways. And insurance covered most of the test cost which would hopefully be the case for you. If anything, it might put some worries to rest, particularly if the results come back negative from whatever broad gene duplications/deletions they test for.

 

I will add that our son's team at the children's hospital recommended we move to physical therapy in the water (aquatic therapy) and he's finally got a tiny bit of muscle and a bit more stamina (but not much change for grip strength).

 

And one of those large exercise balls. Now he just sits on it, lays on it, bounces on it, rolls around on it and I see the improvement in his core. 

 

Obviously, not being a medical doctor or neurologist or anything like that, I'm not saying this is your DD's problem. What are the chances?! But I almost set aside the therapist's recommendation for the original workup (and subsequent genetic testing) because I get so tired of dealing with all of this stuff. And I'm very glad I did it anyway. 

[Crimson Wife]

Who do I ask about low tone? PT or ped?

 

My little one is mildly hypotonic and the lab work discovered a carnitine deficiency. She takes acetyl-l-carnitine (according to our integrative neurodevelopmental pediatrician ALCAR is better absorbed by the body than the other form of carnitine) and co-enzyme Q10. She also gets medium-chain triglycerides through coconut oil and coconut milk (cheaper than MCT oil). Within 6 weeks of starting the supplements DD was able to graduate from PT.

 

I talked to her pediatric neurologist about further testing but as there is currently no treatment aside from the dietary stuff we're already doing, we decided that it wasn't worth the $$$.

[Lecka]

In my area -- retained primitive reflexes are newer, but they are accepted.  Like -- I have had it mentioned by school OTs in an IEP meeting kind of setting.  So -- it is not so "woo woo" that it would not be brought up in an IEP meeting.

 

But, it is also newer information in my area.  People are just now going to trainings about it.  Some people have been to lower-level trainings but are just now going to higher-level trainings.

 

So -- it is accepted, but it is also new, if that makes sense.

 

I am in a smaller town. 

 

I went to a workshop last summer and I didn't attend this session, but they had a session about Rhythmic Movement Training (or whatever the abbreviation is for RMT) and a higher-level trainer came in, and it is something where, within a couple hours drive of us, there is one person who can do training.  Then, to have her level of training (or maybe one lower than her) they would need to go to an out-of-state training. 

 

It is like that for a lot of things here ---- it is a given, people will be looking a couple hours away for training, or traveling out-of-state. 

 

So -- some people have gone to the training, some haven't. 

 

Some people are focusing more on one area, and some are focusing on another area, b/c of the needs of the kids they work with, and also b/c maybe they know that there is something where nobody in our area has the training, and something else where 2 people already have the training ----- so they might go to the new thing that right now nobody does, or they might hear such good things from the other 2 people that they go ahead and do that training. 

 

It is this kind of new thing, though.  So -- for our area, not everybody knows about it, some people know more than others, some people are very big fans, some people are not seeing as much use for it for their specialty area, etc. 

 

You would just ask around, or ask people.  Sure, some people may be less familiar.  In 5 year or 10 years ---- that same person might be more familiar, b/c sometimes things just take time to percolate around, and the people who go to the trainings will take some time to see how things play out with their kids. 

 

So ---- I do, honestly, see it having some signs as possibly a fad, to me.  I am open to it being something that ends up having been a fad in our area.  I am also open to it being something that starts out seeming like a fad, and then it has staying power.  But -- there are people who like it and have favorable opinions, who have more experience with it, whose opinion I do value.  So -- I am not really skeptical, but I am not really into it, either.  I am a little "wait and see" while also -- one of my kids is doing some exercises for it at school, and it seems fine. 

Edited January 16, 2016 by Lecka

[geodob]

Jenn, what you have described is Hypotonia.

This can be caused by brain dysfunction in the Cerebellum. That is important for motor control.

 

It can also be caused by nerve damage, to the signalling process.

 

As well as degenerative muscle disorders.

 

Though their are over 30 different 'neuro-muscular disorders'.

With some being 'progressive'.

 

Where it is important to identify what is the underlying issue?

But as she 'was very malnourished until age 2.5.

This could have had a serious impact on the development of nerve cells, connecting to the muscles?

 

So that I would recommend going through evaluations for a 'neuro-muscular disorder'?

To gain a clearer understanding.