confussed, CP, low muscle tone or dyspraxia?

[Marne]

As some of you know (from pev posts) dd1 has problems with her arms and legs (can't run fast, can't push doors open, struggles with steps), to start with we just though it was part of her Aspergers, then it got more noticable (to her and us) so we asked her school to refer her to OT (which we are still waiting for), our GP has been a waist of time (say's there is nothing wrong with her and refuses to look any further into it), there is clearly a problem and the school are becoming more aware of this.

• Dd1 was late to sit unaided (10-11 months old).

• She could never sit straight in a pushchair (always slumped or slipped down.

• Her feet turn inwards so she's almost walking on the inside part of her foot (not sure what its called).

• She can't run very fast and runs very stiff.

• She cant pedal a bike (just doesn't have the muscle to do it.

• Can't push a door open.

• Cant climb play equipment.

• Struggles to go up and down stairs.

• Struggles to walk down slopes (she will go down on her bottom).

• Often complains that her legs/feet hurt after walking.

• She has good pencil control (can draw and write).

We have had mentioned to us (by pofessionals and non professionals), Dyspraxia (as its liked/crosses over with AS), low muscle tone and a couple of people have mentioned mild CP.

I don't know what to think any more (very confussed), i'm finding it hard to get professionals on my side, i have finaly got dd1's teacher/SENCO on side and she says dd1 is struggling with the excersizes they have been giving her (even the simple ones) but she's still being slow of refering her to OT.

Has anyone else got a dc with similar symptoms and what was the out come (if you have managed to get one)?

I have ds with CP, but was obvious from around 7 months when he couldn't sit unaided, oh and the brain injury! but he had an MRI when he was 3 weeks old, is there any chance you could see your paed and ask to be referrd for one? I know the waiting list is very long if you are an out patient, but it may give you a few answers. I'm sorry I don't know much about dyspraxia, so all the symptoms could be part of that (for all I know)

we have just gone from gdd low musle tone hypermoblity to a cp dx today though has kept the hypermoblity but we had mri scan which showed there was brain damage

I had never really thought of CP, i don't really know much about it. I didn't really notice a problem when she was a baby as she was my first and i had no other children to compare her to, looking back now (after having dd2) i realize how slow she was to roll and sit, she still managed to walk by the time she was 14 months but would not walk outside until she was 4 years old. Isn't CP caused at birth (lack of oxygen to the brain)? As far as i know there was no problems with dd1's birth (then again they did not tell me much), i was in labour a long time with her but she seemed fine after the birth.

Should i be pushing for a MMR? I don't want to put dd1 through something that's not necessary.

I think its more likely to be dyspraxia or just low muscle tone, she doesn't tick all the boxes for dyspraxia as her pencil control is good, she doesn't fall over very often but i put this down to the fact she has taught herself to be very careful.

roundtheband- i'm glad you finally got an answer, does your ds have similar problems to my dd1? Were you offered the MMR or did you have to ask for it?

To be honest...there is such an overlap because you can have CP and have high tone or low, hypermobility tends to go with low tone and dyspraxia overlaps again!

MRIs which show damage generally confirm physical findings for cp.. but then again I have friends whose children have severe CP and 'perfect' MRIs and those with pretty horrible MRIs but nearly normal function.. the brain is an odd thing!

My DS2 has low tone, hypermobility, mildly odd MRI (but not diagnostic).. ticked every box on your list ..
has had all sorts of labels suggested by different docs over the years .

To be honest none of them have made much difference to how he has been treated, or helped. He was referred to orthotics..had Piedros, then splints, WC services etc. Has input from OT for his seating etc so in the end tho it would be 'nice' to have an exact dx for his physical difficulties (for DLA forms etc!) it hasn't actually made much difference..
At 13 (next month) he is still low tone, dyspraxic but has developed tightness in other areas (hips, achilles ) so his physical state has continued to evolve (and puzzle) us.

In his special school (where I also work) there are a few children with ASD who also have mobility/co-ordination difficulties that are more than you would expect and no clear explanation for them.

It is defo worth pushing for an MRI in case something can be seen, but it might not actually yield a clear label. Fighting for OT input tho.. keep at it!! grind them down.....

Sounds like a physio may be your best bet. Dyspraxia generally involves motor planning as well as the execution of a motor skill-ie the messaging is poor. Hypermobility and/or hypotonia can exist in isolation where the planning is ok but the execution is skewed because of poor joint/muscle issues. Its probably important to isolate which of these are her problems if at all possible beacuse the most effective therapy would target the different areas. It is of course possible that she may have dyspraxia and hypermobility so would need even more intense help. if your GP is rubbish can you see another one at all in the practice? A referral to a paed physio as well as an OT would give you a good MOT of her fine and gross motor skills and where her primary issues are...as roundthebend4 says CP diagnosis really needs MRI confirmation.
HTH

Thanks Macforme and oddgirl - I am tempted to change doctors, last time i took dd1 in he told me that dd1 is a normal child and does not have Aspergers, i told him about her muscle problems and he didn't even examine her . At the moment the only person i have on my side is her teacher (who is also the SENCO) but she seems to be clueless to who should be refering her to OT, i spoke to the school nurse last week and she has said 'the SENCO can refer her now. Dd1 has been doing movement classes at school and has struggled with the simple tasks she has been given (like standing on one leg). I think i will have to keep on to the SENCO to make sure the referal is made ASAP.

Dd1 is 6 and its becoming so much more noticeable that she is different to other children her age, she gets upset because she cant keep up and would love to be able to ride a bike with her friends. We have tried her on a bike a few times but she can't pedal and struggles to balance on the seat.

Fingers crossed that we will soon hear from OT.

hmm sort of but bit more extreme he cant run sort of walks but not very far 30 yards to , stairs he tends to crawl up and bum slide down and though ironic he has the fine motor as in bead picking up he does not have the strenth for holding using cultery or using a pen and yes was very late siiting up unaided 13 months not walked to 3 etc

We got referal to neuro after couple years under paed who kept saying GDD low muscle tone htpermoblity no investigations but once saw neuro who was shocked ds had not been refered befpre ,he carried out few tests ordered Mri this we got as emergency as he had started having seizures then dx today

just reading this thread. I have no knowledge inthis arae but there are bikes without pedals that look like normal bikes....could she manage that?

Will see if I can find A link

It is really confusing isn't it!!

My DD had the MRI at 2 weeks old showing damage and we were told more than likely CP.

She has low tone in trunk, mild fluctuating tone in limbs and hypermobility. At 2 yrs we were told she has a dx of 'subtle brain injury' but not CP

We also have the stiff running (people do stare!) but she walks and climbs although does get quite tired. She doesn't have much strength in her arms either - used to collapse when crawling.

You could try for an MRI scan - shouldn't be too traumatic for her although

roundthebend- he sounds more extreme then dd1, she often bum slides down stairs but i never know if she's just being lazy or if its just to much for her legs to climb them, she can climb stairs (one at a time) but is very slow, her sister can now over take her. She's ok with cutlery (but doesn't hold both knife and fork), her writing is ok but she will complain that her wrists/hands hurt whilst writing.

www.likeabike.co.uk/

but there os another which looks likea proper boke/...will keep looking

www.halfords.com/webapp/wcs/stores/servlet/product_storeId_10001_catalogId_10151_productId_73 3201langId-1categoryId205254

Dd has low muscle tone and hypermobility: she never learnt to ride a bike at all (is now 13 so possibly past praying for). All her joints hurt from time to time, particularly after over-exertion. And she has very flat feet (walks on inside of foot). Her balance is poor too, though has improved in recent years (she used to regularly fall down the stairs).

www.jacksons-camping.co.uk/kidstuff/puky/learner-bikes.htm

Thanks popsycal, i was just talking to dh about a balance bike, we have tried her with a scooter but she can't seem to get the hang of it.

We have arranged for the man from Tom cat to come and see if a trike would be suitable.

We got a big (special needs) trike when DS2 was 6..and it was worth it We had a few reps out and in the end went for a Theraplay TMX (he is very tall) and when he outgrew that an adult Pashley Tri 1 trike. It meant we could go out, he could exercise his muscles and he didn't fall off!

He never gets teased.. everyone thinks his trike is COOL
You get them with as much or as little support as needed .

DS2 never got the hang of a scooter either... tried again recently to no avail!

Marne maybe ask for referal if nothing else to put your mind at rest .I got fed up being fob ed of with Its all related to Gdd after it had been proved that ds had the cognitave skills like his peers .thanks to. Non verbal testing so that left something else causinghing his pd .

Now have a dx means can ditch Gdd so that won't be fobbed of with the oh he will catch up stuff spouted by last Ot physios etc which meant less input .

I would second a MRI, although she will possibly have to have a GA because you need to be very still. Good luck. My daughter has mild cp and her symptoms sound similar.

Hi, Marne,

It certainly sounds like your dd has low muscle tone and/or hypermobility. If you have weak connective tissue or low tone, standing on one leg is going to be exceptionally difficult, regardless of whether you have a problem with your co-ordination - you need far stronger muscles than the average person to be able to gain the control to do this, so it is not remotely a simple task. That said, low tone and hypermobility are not uncommon findings alongside dyspraxia, so knowing that your dd has low tone and hypermobility doesn't explain why she has these issues, as they could be caused by weak connective tissue, physical damage to her brain, symptoms of dyspraxia, hypotonia as another symptom of her aspergers (it isn't actually that uncommon to find it alongside aspergers and therefore have it lumped in as part of that diagnosis), or a mix of causes. How important it is to know exactly why your dd has hypotonia/hypermobility is another matter, though, as I doubt knowing why would make a huge difference to your dd's treatment - they can only treat the symptoms, they can't cure it, regardless of the cause. As such, I think pushing for an OT referral is a very good idea.

My ds1 has low muscle tone and hypermobility (he has a diagnosis of Ehlers Danlos syndrome, hypermobile type, which is a connective tissue disorder, but I don't think this fully explains his issues, as I feel quite strongly the cause of his hypotonia is partly neurological, not a connective tissue thing) and has had all the difficulties your dd is having (and also has good handwriting!). He was even assessed by a neuromuscular specialist, who felt his muscle strength was not the issue, albeit he was a bit weak in some areas - ie where he had poor control over his joints because of his hypermobility he hadn't been able to build up muscle strength, rather than having a genuine problem with his muscles per se. Keeping him very active, teaching him how to climb playground equipment and pedal a bike, etc, and getting him to practice constantly, and more or less not letting him give up on things has made a huge difference, albeit very gradual over the years. He has gone over the last 3 years from being unable to move the pedals on a bicycle to, finally, pedalling strongly enough that we are going to attempt taking the stabilisers off his bike - if he can maintain a reasonable speed for long enough, you never know!!!