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Original poster

Got an appointment with a paediatrician at son's school

30 replies

debs40 · 02/03/2009 14:05

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.

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Original poster
debs40 · 27/03/2009 12:06

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!

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madwomanintheattic · 27/03/2009 10:01

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

madwomanintheattic · 27/03/2009 09:59

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)

Original poster
debs40 · 26/03/2009 16:55

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.

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madwomanintheattic · 24/03/2009 18:04

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...

Original poster
debs40 · 24/03/2009 18:00

Thanks for this. I wanted to ask another quick question.

The doctor went through her recommendations with me and said I'd get these in the report which she would release, with my permission, to the school. However, she said that this would take a while as there is typing backlog.

I'm assuming that the school will not have any feedback from her in the meantime?

Do you think I should summarise what she said and raise it with his teacher pending the production of the report?

I don't want to seem like a fuss pot but I just don't know how these things work!

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madwomanintheattic · 24/03/2009 15:53

glad it went well. and glad you have an OT referral

good luck

dd2 has low tone and hypermobility alongside other stuff, and OT very useful on all fronts lol.

now you have nearly as many therapists as us!

Original poster
debs40 · 24/03/2009 12:53

Just to say that I saw a lovely doctor today at school for DS.

Long chat, tests etc. She says he has poor muscle tone and is hypermobile and there are some coordination issues (although he's not necessarily dyspraxic. She says he will tire easily and find it really hard to use a pen

For this and the sensory issues which she could see are a priority she is referring us to the OT and physio dept.

She could see 'Asperger' type traits in DS who made good eye contact but insisted on speaking in the little voice he adopts when shy. She is referring him to speech therapy for this.

She is also referring to another paediatrician for the sensory issues as she wants to rule out epilepsy.

She thought he was quite a complicated chap but lovely - which is my diagnosis too!

I was really pleased that there was no rush to diagnose and stick a label on as I've heard some horror stories. I don't care about labels just reducing distress.

Thank all of you who have posted offering advice and help. It has been much appreciated!!

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Original poster
debs40 · 23/03/2009 10:24

Thanks madwoman that really helps and has made me feel much better - and it gives me something to focus on with paed!

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madwomanintheattic · 23/03/2009 10:21

debs, it may still be sensory issues that can be worked through with a good OT. i knew a little girl who was very similar (in the end she had to wear her her 10 year old sister's school uniform in yr r because anything that 'touched' drove her crazy - it often took more than an hour to get knickers on her lol - and she was known to go to school without them if she could get away with it...)
three years later and after some decent sensory therapy, she's a much happier and confident child. wait and see what the paed suggests, but i'd definitely be asing for an OT trained in sensory integration in your shoes. that way you can hold off the AS dx for a bit and see where you go. AS isn't the end of the world, but long way to go yet. you just need to get some help in place to let ds cope x

Original poster
debs40 · 23/03/2009 10:11

Thanks madwoman..these things have just got more pronounced as time has gone by. I think the change of school (it's much more relaxed and calmer) has highlighted it strangely. I think he feels more able to be himself! Even Dh now sees there's something not right.

I'm not convinced by dyspraxia either - it's beginning to look to me like AS . But I keep thinking, what if I'm wrong and I think my son has AS and there's nothing wrong with him. That would be good but what sort of mum does it make me?

Paediatrician says they don't have a clinic/office to work from so always see people at school. To be honest, I was a bit taken aback at first but then thought that it would be give me the time to chat in private before she sees DS

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madwomanintheattic · 23/03/2009 10:06

(really sorry you're having to face up to this btw - i know not so long ago you were so certain there were no issues. it's no fun, but lots of help out there once you are in the system) good luck with paed appt. not sure why they are having it at school btw - ep is usually at school, paed appointments usually external, but obviously a postcode thing.
not convinced by the dyspraxia suggestion either btw...

madwomanintheattic · 23/03/2009 10:03

ask paed for an OT referral for sensory issues.

Original poster
debs40 · 23/03/2009 09:51

Thanks Wedgie. Yes, that does make sense.

Do you know how these appointments go? Would the paediatrician tell me at this stage if she thought there was an issue of some sort or would she wait and do further investigation before making a diagnosis.

DS' main problem is sensory issues which are just making my life hell at the moment morning and night. Clothes, socks, shoes all result in hysteria,

If we can get this addressed in some way that would be a start.

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WedgiesMum · 20/03/2009 21:37

IME it's not that my DS (age 9 with AS)doesn't like having friends etc or enjoy their company it's just that he is not very good at responding appropriately in social situations - like he is about 4 years younger emotionally. He likes having friends he is just not as skilled as them at the social 'getting along' that the others pick up from each other.

The lack of social skills often seen with ASD I think is not so much about not having friends but having difficulties with maintaining friendships or understanding the basic rules of friendships and therefore being sometimes as you say a bit 'gauche' or just 'getting it wrong' and not understanding why.

My DS is learning all the time about how to make and maintain friendships and sometimes is pretty clunky in his operation of them but he learns them like others learn to read or do sums, by practice and talking about what to do rather than the informal learning by observation that others do as he doesn't read faces or body language all that well.

Does that make sense? I'm not sure if others see it like I do but that's what seems to fit with my DS's dx. Hope it's helpful!

Original poster
debs40 · 20/03/2009 11:51

Thanks for this.

DS has been finding it tough all week. We went into school after 9.30 yesterday as he couldn't get his shoes and socks right. We'd been at it since 8 and we only live two minutes from school.

Again, school were fine about it. Although he had his usual teacher back and he suggested we get DS's shoes out the evening before! If only it were that simple

Anyhow, I've made a big long list and will tell the doctor the depth of these issues we've been managing at home and which are only just starting to surface at school.

Do you know how the social interaction side of things fits with ASD? DS has friends and likes to have them over for playdates. I think he is a little more gauche perhaps than the other boys but he seems happy enough in the company of others. This is the bit I feel would not fit an ASD diagnosis unless I'm missing something!

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WetAugust · 19/03/2009 22:21

Hi
In some ways it's good that school are seeing the ame behaviour that you see at home as it will make them more likely to acknowledge there are problems and hopefully start looking for additional support for him.

We were always told that as things don't come naturally to ASD children in the same ways as they do to most children the ASD child is in fact 'acting' their way through the day trying to fit in without truly inderstanding why. They can sometimes hold it in at school / home but vbecome explosive in the other environment when the presure just becomes too great.

I hope you can get the Paed to initiate an ASD assessment as that is what it sounds like. However school are supposed to support behaviours and not diagnoses so whatever gets him through the day in the meantime, school should be addressing.

It's worth documented all these ASD-like behaviours for your meeting.

Best wishes

Original poster
debs40 · 16/03/2009 11:38

Thanks for this WetAugust.

Interestingly, over the last week or so, DS has been exhibiting some of his major stress issues at school so I think for the first time they may be getting a taste of what I've been saying.

He wouldn't do PE last week and was wearing his lace up boots again. He also wouldn't go out at playtime and today, he refused to go into class until we found him somewhere quiet to sit behind a table/bookcase.

His current teacher used to have him for one day a week and now has him for three and I think he feels much more relaxed with her so I think, strangely, that is helping him be more open about his distress/stress.

Does that make sense? It was upsetting to leave him behind the bookcase but the teacher handled it really well and let a friend sit with him and said there was no pressure to do anything and that he could join the class on the carpet when he felt able.

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WetAugust · 11/03/2009 23:28

TBH I would only ask those who you think would recognise and concur with your concerns. the last thing you need at the meet is a techer or SENCO disagreeing with every behaviour you describe to the Paed. Children can act very differently in school to the way they act at home. If they don't see the same behaviours then there is the danger that the Paed will dismiss you as an 'over-concerned parent' -it happens.
Not trying to plant the big Monty Python foot on your confidence - just pointing out some difficulties other mothers I know have faced.
Best wishes

Original poster
debs40 · 03/03/2009 16:59

Thanks. Teacher just said - I haven't been asked to give input but will do if required.

I don't think he knew the appointment was at school and probably thinks I'm a bit mad for asking for a referral if all seems well at school. I'm not getting bogged down with that one, although it does feel slightly uncomfortable to be making a fuss.

The school doesn't see what I see so I'll try not to take it personally!

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MaryBS · 03/03/2009 15:00

I have sensory issues too, so I know what that feels like, poor lamb!

Original poster
debs40 · 03/03/2009 09:20

Thanks Mary. I know you are right. It just feels such an odd thing to do. If he had spots or a stomach ache, you'd take him down to the GP and talk about it all in front of him. You can't do that here.

I will contact the school and see whether anyone is interested in talking to me about it! I get the feeling that, because they don't see any of this or none of it that they've mentioned, they've just left me to it.

DS was screaming as he went into the playground today thought because he could 'smell something' and he couldn't eat his sandwiches yesterday (or rather he chewed them up and spat them out) because he could smell yoghurt. So I think if they haven't already seen some of the problem, they will at some point!

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MaryBS · 03/03/2009 08:32

I think it is worth talking to the school before the appointment. To maybe go over the list of points you've noted down. Their input will also be needed. Does your school have a Special Education Needs Co-ordinator (SENCO)? They should be involved.

And its not going behind your son's back, even if it feels like it. Its to get him the help and support he needs.

Original poster
debs40 · 03/03/2009 07:44

24th March. It is very strange but writing down a list of all the things that concern me feels like talking about ds behind his back!

The appointment came through the school office but neither my son's teacher (although there is some flux with that position at the moment as his teacher is covering someone else) nor the head have mentioned anything. Previously, I have mentioned some of my son's sensory issues particularly getting changed and food

In the return consent slip, I have offered to talk about the issue. Should I leave it at that or ask to talk to someone? I assume they have some input?

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MaryBS · 03/03/2009 07:35

My DS's paed was very good, fortunately. When is your appointment?