Dd1's paed appointment, muscle tone, hypermobile, no reflexes in legs?

[Marne]

Hi, dd1 had a paed appointment today (after waiting almost 2 years), as many of you know she already has a dx of AS but we were worried about her physical develepment and muscle tone. Paed checked her over and did some simple ecxersizes (standing on one leg ect..), when he checked her reflexes he could'nt get any response from her legs (arms were fine), he said he wasn't sure if it was a problem or if dd1 was just not relaxed enough. He said she has fluctulating (sp) muscle tone, one minute she's stiff (walks stiff) and the next she is really floppy and bendy (maybe because of her hypermobilty?).

Should i be worried about her reflexes? what does it meen?

He has referred her to physio and OT in hope they can do some excersizes to improve muscle tone.

I assume if she hasn't got any reflexes in her legs you can do retained reflex therapy (which is just OT) to cure it. But that's just a guess.

"I assume if she hasn't got any reflexes in her legs you can do retained reflex therapy (which is just OT) to cure it. But that's just a guess."

IndigoBell, is there actually any evidence to say that RRT is a cure? Wouldn't it be safer to describe it as a 'treatment' or 'therapy'?

DGS (2.8) has this type of fluctuating muscle tone, hypertonic and hypotonic, but he has CP. He has no real spasticity though and can move through all ranges. He also has hypermobile hands and fingers (freaky looking when they bend almost back to his wrist, but doesnt bother him or his progress). Obviously he is more extreme than your DD as proper CP. He cant walk yet, but just though I'd explain about the fluctuating muscle tone thing. No idea why DD should show this, but DGSs was a hypoxic birth injury.

Sorry cant help with the reflexes except to say it forms part of the overall neurological examination. I wouldnt get stressed about it though as plenty of NT people dont have the knee jerk thing. I'm pretty sure its nothing to do with retained reflexes though, thats a whole different ball game.

Sneezecake might be right about retained reflexes have nothing to do with reflexes in the leg.

But lougle. It seems fair to call retained reflex therapy a cure because it does cure retained reflexes. Ie DS had retained the Moro reflex, and now after a year of nightly OT exercises he no longer has the Moro reflex.

It not only gets rid of the unwanted baby reflexes but also gives you the desired adult postural reflexes.

My DD has fluctuating tone as well - she had a birth injury similar to sneezecakes DGS. It is not noticeable to anyone unless she gets excited or finds something physically difficult. She's never been formally dx with CP despite the injury to her brain. She also has hypermobility in almost every joint and her startle reflex is still apparent at times.

Definitely recommend OT and physio as they can work with balance and any other issues - DD has had physio since she was born!

yep. another fluctuating muscle tone/ hypermobile/ birth injury/ athetoid cp kid here.

dd2 does still have some retained reflexes too, but other than swimming and ballet they don't cause too much of a problem - she can swim using her arms (with her head underwater) or breathe, not both. and ballet is similar in that arm movements can sometimes trigger head responses and she still has a retained moro in the usual manner, as well as with sudden unexpected noise. and sometimes some reciprocal movements with her hands/ arms too...

(it sounds a lot worse than it is. she skis blue runs, has an adapted skateboard, and wants to learn to tapdance )

i wouldn't worry about the reflexes per se. it's a soft marker, but i don't think unexpected in a child with tone issues - it's nothing i would be concerned about in itself.

but yes, physio. and ot is really useful for pencil work/ self help if she's at that point. some kids with hypermobility develop really interesting ways of thumb wrapping...

ds2 has Mild CP, he is stiff in the legs especially when walking/running but everywhere else is very floppy.

His reflexes on examination are described as "brisk & jerky". Not sure if this is typical of spastic CPor not??

Thank you for your replies, it's really interesting to see the link with CP, i have often wondered if it could be mild CP but paed seemed to rule it out as dd1 did not need help breathing after bith, dd1's birth is a bit of a blur, i was in labour for a long time (pushing for 5+ hours, i can remember the mid wife panicking but was not told why, ther was talk of a c-section as i think dd1's heart beat was fast/or slow but eventually she was born and cried straight away, i have often wondered if the mid-wife was hiding anything (just paronoid). Dd1's legs seemed to be squished (knees tucked in) from birth and i always thought they would just correct but they never seemed too (she almost looked like a frog), they were always realy tight/stiff. Now she's older its even more noticable, when she runs her legs are stiff but her top half is floppy but when she sits she's very floppy and bendy.

Fingers crossed OT and physio will improve her muscle tone.

Hi Marne. Describing DD as you have she sounds very like a mild CP. Mild cases of CP are often missed but present very like your DD. imo if it looks like a duck, quacks like a duck... etc!
Dipping heart rates in labour, provided they dip a lot, can cause these mild symptoms, and talk of c sections is a definite pointer to foetal distress. DD sounds like our little guy only much milder, and the great news for you and DD is the improvement can go on for years. The physio will hopefully give you exercises for improving trunk strength as all limbs rely on a strong trunk to improve hand dexterity and walking gait etc. Its all a bit complicated really. We went to Brainwave and they gave us a very detailed picture of DGSs weaknesses and how to improve on them. (He is doing brilliantly btw with these exercises). What you describe is underlying hypotonia but hypertonic response on excitement and movement initiation.

Don't worry I guarantee DD will improve

did they ever do an mri marne? dd2 was originally dx spastic quad - her legs were v tight, but she's low/ fluctuating really now. intention tightening used to be a huge issue. as with most of the dc's here, the low core tone is often the reason for the high limb tone - so improving the core helps with the extremities! dd2 has finally started horseriding, and loves it!

how old is she now? i find it v difficult to keep track - she's 5/6 or so, isn't she? i seem to remember her being not as old as dd2 but not a teeny... apols if wrong!

Absolutely with the trunk strength. It is not so much the bending forward and back that does the strengthening, but the side to side movements where whopping great muscles are. Hence horseriding is perfect!. this is the ideal rocker board.

Thank you sneezecake-i'm tempted to track down my hopital records from dd1's birth, its all a bit of a blur as it was such a long painful labour, the mid wife was very hush hush (a lot of whispering and not telling me what was going on). I was going to get a rocker board , we have started doing excersizes with the gym ball and dd2's OT has given us some excersizes to use with both of them.

Madwoman- she hasn't had a mri, the paed we saw on monday said he was there to rule out nerve damage or neurological problems, he asked about the birth, i tried to tell him but he asked if dd1 needed help breathing (she didn't) and wrote down on his notes 'normal birth/no problems', she's 7 now ,her sister is 5 and also has low tone in her trunk but its a lot different to dd1's problems (dd2 is just a bit floppy and slumps a little, she's already seeing OT). I'm going to check out a friends horses today to see if they are ok for dd1 to ride but could be a struggle getting her on one (dd2 on the other hand will love it).

they are the same age. dd2 was always really anti horse riding. it was only last year (just before she was 7) that we managed to get her on a horse at the local rodeo (not a bucker lol) and she decided it would be a good thing, so persevere! she might change her mind any day now! from a practical pov, they put a belt on dd2 with grab handles for the walkers to use to correct her position if she starts listing sideways... might be worth finding out if they have one? the rda have volunteers who are very good at persuading reluctants, and have lots of experiecne with asd!

interesting that both have tone issues though - is anyone else in the family hypermobile/ double jointed etc?

Fingers crossed i can get her on a horse , both girls have ASD and both have low muscle tone but dd1 is more severe, dd2's tends to be more her neck and trunk due to poor posture and her (what i call) autistic run but her legs and arms are stronger than dd1's (she can climb, jump, run which dd1 struggles with), i dont think theres anyone else in the family with low tone or hypermobile (though dh has bendy legs).

the physio we see for DD1 has been checking her for "catches" when she moves the muscles. She told us this is a clear indictator of difficutlies with neuo, rather than just muscles themselves. Im sure your Physio will check.
We have been questioning weather to get DD1 an MRI as they had questioned CP on and off due to physical development but never done.
We have decided against it as shes now 8years old, and it wont change treatment and i dont think she would manage it.
She's awaiting shoe inserts at the moment.
BUT I know our physio was very clear that toe walking can cause some major issues.
Both mine have ASD, and DD2 is hypomobilie, so hopefully it wont be CP, and maybe someothing less scarcy (not that ASD isnt though)

hi
my ds has cpdown his left side he to was born fine we didnt notice anything till he was about 4 months he was twin 2 he has a sister who is fine.
he couldnt sit un aided or lift his head.
have u been advised about a brain scan? i would demand one to put your mind at rest.
my son is now 2 he has speech problems(he dosnt talk at all) feeding problems he is on baclofen to loosin his muscle tone but he has started to sit unaides and has a splint for his leg to try and get him on his feet.
he has a ot and pshyo and the have been miracle workers.
take each day as it come and follow ant advice given by them
good luck xxx

Fingers crossed its just something linked with the ASD, like you said lisa 'a dx of CP wont change the treatment', i'm not sure if i could put her through a mri. I'm hoping physio will look at her feet and give her inserts. She was late to sit up (i always had to prop her up), she always slumped in the pushchair but walked at 15 months (refussed to walk outside). I'm looking forward to seeing OT and physio.

Dd1 didn't sit up till 10months, never crawled and didn't walk till after two!

Its funny, some children with CP have autistic traits or ASD. Maybe it goes the other way too in a mild way, after all its all to do with the brain

For many years I was v worried about my ds lack of reflexes b/c it was immediately linked to a prognosis of neuro deterioration and although this can be true it is not a rule (thankfully). I have recently come across a few nt people and more that they knew about that are adults, nt and have missing reflexes. I wish drs were not so depressingly negative. I know a dr whose dd is hypermobile with missing reflexes and all he has done so far is add zinc supplement as from tests and research he worked out that it might help for hypermobility - and apprently it has made a difference.
Interestingly, my ds was also Zn deficient (and copper high), but not hypermobile and for him Zn has helped in other ways, eg more fluid thinking.
Marne, from my experience there is quite a bit that you can do with nutritional approach too, my ds has made great progress with gf diet plus some supplements and we are also doing retained reflexes now.
We also declined scan as I felt stating the obvious with no hope as such in terms of treatment was not worth the hassle and just get on with tweaking diet to fix deficiencies and remove any toxic overload.

That's really interesting nightcat - I didn't know supplements could help with these things!

Marne - I'm sure you'll already know but low core muscle tone is common with ASD and Dypsraxia. I've passed this link around before www.skillsforaction.com/?q=node/22 but is really useful to help with core muscle strength which in turn improves limb function (exactly what we are working on with DD!). We're still waiting for RDA but everyone is in agreement it is the perfect exercise for core strength- can't wait to get DD started!

we also use gym ball which is supposed to be good for core strength

Nightcat. How would we go about getting DGS additional zinc and copper and ?other trace minerals. He's 3 in september but a very poor eater and everything lumpy puree as he has no teeth!

Saw a link with a list to minerals somewhere earlier ? the other place. Will hunt it down and print out. Maybe we can put ground nuts in his food?
He has multi vitamin drops and fish oils already.

thank you smashingtime.

We use the gym ball a lot for both girls but its become a battle as they argue over who's turn it is (dd2 is useless about turn taking), Ot gave us some good games for pulling things up the stairs with dd2 which would also help dd1.

sneezecakes, search for zinc foods, my ds was deficient as kept refusing meat, but zn from red meat is absorbed better than from veg (hope you are not vegeterian?). Even if he eats little meat, you can make caseroles using it.
Also, pumpkin seeds and tahini are supposed to be good, we like pumpkin seeds spread better than tahini, but I use ground sesame seeds when baking or for pancakes.
I do give my ds zinc + B vit supplement from time to time, but try to use certain foods more than others. I tested his hair for minerals and that's how I found Zn deficiency (later liver function blood test confirmed it). If zn is deficient, it's often b/c copper is too high, so prob no need to supplement copper, but best to test. Children's vit called forceval has most vits & minerals and I used to buy it over the counter in the past, but now I do selected supplements only that I know he is deficient in.