Questions about cerebral palsy

[armani]

Hi, I am currently in the midst of having my dd aged 7 assessed by a developmental pead. She has been assessed by an OT and scored 0.6 percentile for motor co ordination. Her handwriting is very messy and hardly readable. She also has a very awkward pencil grip. She appears to be really clumsy, she is always knocking herself and falling over her own feet. School have noted that her arms seem independent of her body.

She has been assessed by physio and it was noted that she has tight hamstring muscles and her feet tend to roll inwards. She also has a slight shortening of her left leg. Physio have given me some exercises to do at home and signed her off.

Dd also has a benign growth in the bone in her left leg, known as fibrodysplasia. So far this has not caused her any issues, although it seems bone deformities are common with children with cp.

Dd has been dx with global learning disabilities. She is very behind in ms school and has made no progress, so cognitive problems are an issue.

Dd has been known to salt since starting school in reception. She has issues with speech clarity and has been noted to have a lot of saliva in her mouth - dribbly etc. Despite various periods of therapy her clarity has not improved.

So the reason I am posting is because I have no experience of cp and would like some advice. Does the above sound like dd has mild cp or am I barking up the wrong tree? I feel like if she had it I would have noticed before now. I haven't an appt with pead for another few months so am wondering if the above are symptoms of cp or have I got this totally wrong?

[Alarielle]

My DS who is 4 has cp (hemiplegia) was only diagnosed when he was 3.5 even though he was at high risk of having it and I have noticed most children are diagnosed quite earlier than he was. A lot of the problems you have listed are the same as what my DS have and I personally wouldn't rule it out. I have no exsperience of fibrodysplasia but hopefully someone will come along soon who can give you some information. Write down any observations/questions for when you next see the pead as I know my mind goes blank and I always forget to ask certain things.

I know looking back at DS's development, he was my first child and I didn't have much experience of kids I just overlooked quite a few things. I just put them down to that was just how he was (I think I was over focused on looking for any type of learning disability and the physical problems/delays didn't seem to register) and his paed discharged him from his care at 19 months old even though he was developmentally delayed. Sometimes they can overlook problems etc.Now I have a 13 month old and there is such a stark contrast of what her development is to what his was and I know I would have been more concerned earlier if I already had children when he was born.

[armani]

Thanks for replying :) dd is my first child and it is only recently that I have noticed how she is so different from other children. Developmentally I can't say I noticed That she was any different, although she never crawled on all fours she sort of pulled herself along using her arms. She was also very late at things such as being able to use scissors, hold a pencil etc.

I am scared to bring it up with the pead incase they think I'm some kind of neurotic mother. My family are having difficulty coming to terms with dds issues and keep saying I am over reacting and that she will catch up eventually, so I am doubting myself.

I think I just need some reassurance that I am not over reacting .

[kalpamum]

Gosh you have just described my DD. She is 12 and at the age of 10 decided to go down the route of CP. MRI scan was done and came back negative. We didn't get very far with NHS OT and pead (Was told we don't like to label children) I have gone private and found DD has Sensory, vestibular issues, Auditory processing difficulties. With regards to the weak muscle tone and one side of her body being larger we are still seeing physio and now down the route of still trying to diagnose the cause of all her muscle problems.
I thought that DD would catch up eventually but at the age of 12 still has many problems similar to your DD. She also has huge bunions on her feet and wear special orthotic insoles for her feet rolling inwards. I am going back to OT as physio thinks it could be down to being praxic.
I would suggest that you request investigation for CP only as a piece of mind that it is not and then investigate other causes such as dyspraxia. Also it would be worth getting a referral to orthotics dept for insoles to help with her walking if this has not already been arranged.
Now DD is older she is realizing that she has difficulties and gets very frustrated. As a parent I need to know what the cause is and this is why DD does certain things for example; there is only so many times I can carry on trying to re train DD how to eat not messily and just have to come to terms that this is the way she is.
Good luck and don't be fobbed off by professions saying 'We don't like to label children'

[CheeseToasty]

Ds is 7 and has similar difficulties apart from fibrodysplasia. Cp was brought up once but isn't thought to be the cause. He was seen by a private ot and she believed him to possibably have dyspraxia, sensory processing disorder. He still is undiagnosed. The ot said his tight hamstrings were due to the muscles overcompensating due to his poor core strength.

[salondon]

kalpamum - If the MRI did not highlight cerebral palsy, did you still get that diagnosis from a doctor?

How can cerebral palsy be invetigated?

[fasparent]

Sound like a mirror of our DS signed off physio, speech therapy. . etc, Still at level 1 , he is 12. Has communication problems but can sign.
His CP effects left side of his limbs. He started dance did more for him
than years of physio and lots of inclusion loves it. Is now ranked 2nd in the UK in Latin and American Dance

[armani]

Thanks for all of your replies. I am going to ask pead to refer for a MRI scan just to rule out cp. We have an appt with OT on Monday for further investigations regarding dds VMI scores, so will see what comes from that.

[Galena]

One of the footballers at the Paralympics didn't know he had CP until he had a medical after signing with a 'mainstream' football club... apparently.

[whoamiiam]

Hi really sorry to jump on this thread. Am a lurker but have similar question.

Does anyone know how they actually do investigate for cp? I ask as ds is 3.5 has epilepsy and developmental delay. All gross motors skills are there but the quality is very immature, poor fine motor skills again immature, poor balance and co-ordination, some sensory issues, poor listening and concentration, under salt since 2 and major dribbler still, and has an intention tremor and losses power in one hand when has a fever.

Has had an MRI scan which came back abnormal showing small amount of scarring and some small abnormalities in one part. Mild cp has been mentioned twice but not diagnosed as no stiffness? Does this sound right? I thought they may be able to say one way or another after these tests? Plus I worry then we are not being seen by OT as feel would be helpful for, motor skills and sensory issues?

Anyone know anything about this pls? Sorry to hijack

[hanbee]

whoamiiam (sp?!) My DS1 has just been diagnosed with cerebral palsy aged 4.5, he has damage to only one part of his brain. The damage is called periventricular leukomalacia - damage to the white matter surrounding the blood vessels. He also has no stiffness just v poor motor control, planning, spatial awareness etc. He has a significant learning disability and severe expressive language disorder (about 10 unclear words). Up until now he was just described as globally developmentally delayed. Does this sound similar to your son?

[armani]

Whoamiiam I am suprised your ds has not been assessed by OT, I would definatly be asking for a referral, to help address your ds motor co ordination.
I think they asses for cp by an MRI scan so they can see the brain and identify any abnormalities. But I'm not sure of that in itself is enough to be dx with cp.

[alwayslateforwork]

Cp can be dx by MRI (if brain damage shows up) but is more ordinarily diagnosed by clinical presentation. An MRI can confirm a dx, iyswim.

That said, MRIs don't give you the full story. A child with minimal damage showing on an MRI can have very significant difficulties, and a fairly catastrophic looking MRI can be present in a child with only minor disability.

Cp doesn't necessarily mean learning disability, either - dd2 has cp (she was originally diagnosed with spastic quadriplegia) and at 5 she had an iq in the 140s, higher than her consultant paediatrician.

Cp doesn't mean stiffness either. If you don't have spasticity, you don't have spastic cp, which is the most common type by far, but you can still have dyskinetic or ataxic cp - but any issues with muscle tone and muscle control can be related - dd2 used to be very spastic, but now has very low and occasionally fluctuating tone (she has an athetoid cp (dyskinetic) dx but does have ataxia as well, so her presentation is more of mixed cp, even though she doesn't have any spasticity). She had intention tremor, etc etc.

Mostly a cp dx is just done through clinical presentation over time. A lot of kids are labelled 'developmental delay' for a couple of years in the first instance. Really you just need to keep discussing cause with your physio, OT and community or consultant paediatrician. In most areas, therapists are unable to suggest dx or discuss with parents without the official 'dx' from paed - but they can talk symptoms. In most cases it is extremely obvious that therapists are treating cp, even though they don't use that terminology.

Dyspraxia is worth considering though, obv.

[alwayslateforwork]

Lisad, tight tendons can be caused by toe walking though - which is common in children who present with autism for (usually) sensory reasons - and so in an older child would be something that has been 'caused' by years of a tendency to toe walk, rather than the underlying neurological disability causing the issues with muscle tone, for example.

So both kids will have tight tendons causing toe walking - but the underlying disabilities will be different. It's not unusual for kids with an autism dx to have this, and isn't in itself indicative of a muscle tone issue.

[alwayslateforwork]

(Ie in cp, the muscle tone causes the child to toe walk - in autism, the child toe walks, and causes the tendons to shorten) both have problems walking normally.

Chicken and egg.

[alwayslateforwork]

Ah, ok. The club foot thing is obviously a factor too. The late walking will not have allowed the tendons to stretch from the weightbearing action. Were you advised to do physio at that point?

It's all totally chicken and egg - was her walking delayed because of the club foot/ treatment, and so the tendons shortened, or was the tendon tightness a complicating factor?!

I definitely wouldn't be assuming cp from the tendon issue with that background. (Obv there are all sorts of other reasons to consider cp, potentially, but I wouldn't be hanging my hat on it with that clinical history - especially with an existing autism dx)

[whoamiiam]

Hi all thanks for responses. hanbee ds has similar delays but is not as severe. He has had a speech and language explosion in last 6 months and has just started to express his needs in 2 word phrases. Can join up to 3 words but clarity is lost.

Physically he does everything (except some

[whoamiiam]

Some fine motor tasks). But both I and developmental paed say it is done like two year old not 3.5. For eg when he runs he puts both arms up like a baby does and waddles! He will trip on a flat pavement too. I would say cognitively its all there but he really does struggle with listening and attention, and sensory seeking behaviour. Also still have very large number of complex absence type seizures through the day that throw him.

Also do you know is periventricular leukomalcia the same as periventricular glisiosis or am I right in thinking periventricular glisiosis precedes periventricular leukomalcia? As report stated ds has glisiosis

alwayslate this was my understanding of cp. I think that may be case here viewing clinical presentation over time and we are being referred to a neurologist at bigger hospital where as yet we are under peadiactrics because they want them to just have a look at mri. I have to say the way ds presents has lots of attributes of very mild ataxic cp from the little I've read about it.

I try to not get too hung up on getting a diagnosis as long as each symptom is being dealt with but I think may be missing things that may help with OT.


armani yes am going to chase OT referral!

Many thanks

[alwayslateforwork]

Whoami, was ds prem?

[whoamiiam]

No full term! Although a very difficult and mismanaged (IMO) labour. Been distressed a long time but didn't appear oxygen deprived at birth.

[armani]

Sounds like dd's birth whoamiiam.

Dd had appt with OT today and the OT was investigating her visual perception. It appears dd really struggles with visual perception and the OT mentioned global development delay. Her results were

[whoamiiam]

Was your dd delayed in early milestones? Does visual perception mean like spatial awareness etc?

[alwayslateforwork]

Dd2 was full term but spent 5 weeks in scbu and was discharged with full therapy team. Back in hospital within the week, lol. I only ask as pvl much more common in preemies. We're in, um, about yr 4 or 5 of a med neg case from birth injury. They called it developmental delay for two years, but given that the consultant advised we apply for DLA when she was 6 mos old, and she got awarded high rate, it was pretty obvious they knew all along... I had certainly self-dx by that point.

[hanbee]

My DS1 was also term but has pvl. He also had a bad labour and I do wonder whether we should now get all his notes. He was considered developmentally delayed from 2 although problems existed ftom day 1, beginning with v poor feeding and then very slow to hit milestones.