Got an appointment with a paediatrician at son's school

[debs40]

Hi

I have posted before about my son who is 6. He has some sensory issues - problems with clothes and smells and chewing things for example. He licks and chews his fingers and plays with his tongue all the time. he now has a rash under his mouth because of it. We have terrible trouble with shoes which need to be very snug and trousers, underpants and big BIG problems with socks!

He sometimes gets overwhelmed in crowds. He seems to be ok at school but can't seem tell when teachers are really angry or why (he thinks people are 'shouting at him' when they're asking him to do something) and this worries him. He gets very shy and adopts a strange voice to deal with it when talking to people he doesn't know.

He has food issues and the sight or thought of some food e.g. banana can make him gag.

He has alot of meltdowns for his age, particularly at times of change e.g. starting a holiday or going back to school.

Anyway, the GP suggested dyspraxia and we now have a referral date to see a paediatrician in March.

The appointment takes place at school. Is this usual? I can speak to the doctor first and then ds gets brought in to do some tests.

I feel really strange about all this. I know there is something not right but I also feel a little bit like I'm betraying him and talking about him behind his back - does that make sense?

Any advice about the content of the appointment or how to handle it would be much appreciated.

yes - i'd ask the teacher if she can spare 5 minutes tomorrow for feedback. sometimes these things can take a few weeks... when you get your OT, ask for copies of her reports for school (this won't automatically happen) and if/ when they suggest ds needs an IEP, ask OT for input on target-setting. (i'm thinking for fine motor rather than sensory targets, but see what the teacher thinks would be appropriate) long way before this - but it'll give you something to think about...

Thanks madwoman..

Do you know much about the effect of low muscle tone and hypermobility? Doctor said it would make it harder for ds to write and ride a bike but I wondered what actual impact you've experienced.

it's quite common - i'm sure you remember a phase at school where all the 'double jointed' kids would stretch and bend lol... you can have a look at ehlers danlos syndrome on the net as well.

low tone generally can lead to fatigue as it's more difficult for kids to hold themselves in the right position (for us as dd2 has low tone in her trunk as well we have supportive seating in school for example - but that's a bit extreme lol) low tone and hypermobility can make it more difficult for control and stability (so in a gross motor context might mean issues similar to dyspraxia (co-ordination and what used to be called 'clumsy child' lol), whilst in a fine motor context it will be trickier to hold and maintain pencil grip, for example) it all depends on which areas of the body are affected and to what extent. some children with low tone and hypermobility find they do experience some pain in some joints, but it all depends ont he extent really. for example, dd2 has hypermobile joints in her fingers and thumb so when she exerts pressure to write, the joint effectively reverses, so there is a tendency to develop a 'wrap' or revert to a dagger grasp. we're currently trialling different pencil grips etc - but there are lots of different ideas to try out - the OT will assess exactly what would help and come up with some fine motor exercises to help promote stability.
it's difficult for me to judge where to draw the line in dd2's case - she has low tone generally but also issues with fluctuating tone, so isn't a classic low-tone kid tbh. most of her physio and OT is concerned with promoting stability though. her issues with muscle tone are caused by cerebral palsy, so it's probably not really relevant for me to give you a list of impacts lol i wouldn't know where to start!
she can pedal though although she has pelvic guides and rides a trike - there's no way yet i'm letting her loose on a two wheeler! she goes to ballet, and swimming lessons, and over half term was learning to ski - so although she has a very grand label, she's a fairly average (if wobbly) kid these days.
in all honestly, i would say the pencil stuff is probably the biggest issue - you might want to have a look at 'write from the start' by teodorescu which is a good programme if you are looking for something to help prevent further problems and help him along the way... in conjunction with the OT looking at grip...
but keep on at them about the sensory side - pointless being able to hold a pencil if you can't get to school because your socks are touching you... we've been through some sensory stuff too but fortunately got good support very early on - so although we have a few issues left with noise, most of the touch and visual (light etc...) has been sorted.
good luck (and sorry for rambling lol)

oh, stabilo s'move easy
good pen/cil and they do right and left handed versions - can help correct and maintain grip...

Thanks for this it is really helpful!

You are completely right about the sensory stuff. It took an hour and a half to get shoes and socks right today. I try so hard not to sound exasperated with him but what are you supposed to do? I had his socks in the freezer twice! He got so distressed and we went into school about 40 minutes later. I feel like I'm shell shocked by the time I've dropped him and little ds off.

I've asked the paed to give us an idea how long this will take to get an OT referral as we will look into private if it takes too long.

DS definitely has bendy fingers too and gets tired easily. It was funny as when he saw the doctor she asked what he liked and didn't like about school and he said he didn't like handwriting. Afterwards, she said no wonder as it must be really difficult for him to grip the pencil

Thanks so much for answering. it really helps to hear from someone who understands!