UK - what to expect at paediatrician appointment?

[Fivebyfive2]

Hi all!

Just wondering if anyone can give me some advice on what to expect at an upcoming paediatric appointment with my 3.5 year old son? We had a paediatric nurse (sorry this is probably not the fully correct title!) come out last week and ask us questions, then do activities with him like block building, looking through a picture book and asking questions etc. She said the next step was an appointment with a paediatrician, but I'm just wondering what to expect at that appointment?

He's being assessed for autism due to a few things-

Being "in the black" on a few things at his 2.5 and then follow up 3 year hv review, mostly fine motor and social/emotional skills.

He's a good communicator, is fully toilet trained etc with a wide vocabulary but is very sensitive and gets really anxious about alot of things. Like worryingly anxious, if that makes sense? Sensory wise he can't wear certain fabrics, have any labels in his clothes, likes cold baths (an improvement, as until recently we couldn't get him in a bath) he spins and runs in circles alot and also likes to do this thing where he'll kind of...make himself out breath?? If that makes any sense, I'm not sure how to describe it? His sleep has always been a real struggle, he doesn't seem to need as much as most kids and really struggles to wind down. He still wakes multiple times a night. His memory is amazing, even as a baby he'd get upset if we went a different way in the buggy and has always been very sensitive to noise.

We're not sure if it's autism or if he's just a really sensitive kid, or something else but either way just want some help supporting him, especially with school looming next year.

I'm just a bit nervous of what to expect from these appointments I guess? Sorry that was so long!

At our appointment it was largely observing the child (who was demonstrating many textbook traits!) and asking me a lot about his development, behaviour, any concerns etc. Took about half an hour.

He requested blood tests (not at that appointment, he had them under GA when in for an unrelated op) to check for any genetic conditions that may cause autism and we had a diagnosis verbally that day (paediatrician also had SLT reports and nursery reports as well though) and a letter in the post to confirm.

Hello!

In my area (essex) the nurse you would of seen would normally be from the children's assessment and development unit (cadu), they do initial observations on children in the home and nursery settings. They will either comment if the child's behaviour is strongly suggestive of Autism or not.

The paediatrician appointment normally involves all those who have seen your child, could be speech and language, health visitor, the nurse and a senco from nursery.
You will be spoken to prior, your concerns etc then asked to leave the room whilst the others give their evidence.
You will then be invited back in for feedback, given a diagnosis if appropriate or told what their next plan will be (could be a 6 month review). If you are given a diagnosis, the nurse will provide you with information for support and should contact you within 6 weeks to see how things are.
I hope this helps, they are sensitive appointments and in my experience always handled with respect.

I should add mine was diagnosed in the middle of lockdown so there were no panel meetings, it was all done through reports

Thank you! This is making me feel better/less nervous. I think although I know we need to do this and it is for him in the long term, I feel bad about putting my son through "assessments" ?

The hv has been really supportive and it was our GP who initiated the referral after we spoke to her about everything.

They have one report from his old nursery where he really struggled, to the point we were considering trying to keep him at home. But we tried a new nursery from January, it's smaller, the days are shorter and the staff are just so lovely. Their report is much more positive but still highlights the same kind of concerns that we, the previous nursery and hv highlighted.

I guess we'll wait and see!

The assessment process is different in each Health Authority, but one thing that is worth doing is to make some bullet points or notes before you go, so you don't forget to mention anything that you think might be relevant.

Try to be as specific and give measures where you can - so, you say he doesn't sleep well - try and keep a sleep diary for a week, as every parent's "doesn't sleep well" is different.

Also, ask Nursery if they can do you some bullet points, and / or give you a developmental profile to share with the Paediatrician.

Usually the Paediatrician will ask you lots of things whilst observing the child but the more information they have, the better.

Hi @Fivebyfive2 - are you still here? How did you get on in the end? I’ve just had a letter through about making an appointment so I’m mooching around online trying to find bits of information about what to expect. It would be great to hear how you got on and how you’re doing now?

My son (2 and 8 months) seems to have ‘grown out of’ a number of traits he was demonstrating when we initially asked for a referral but his speech and language os still delayed so I’m pleased to have an appointment come through anyway!

@HallidayJones6779 hi! Yep still here 😀

Ok so my first paediatric appointment was actually a disaster - I think I thought it was something more than it was and she was very short in her attitude. But I sent an email after the appointment and we still see her now, almost 2 years later.

We still haven't actually had my son's autism assessment because of waiting lists etc but he's now on a right to choose list with another service and should be seen in July 🤞

If there's anything you want to know/ask just fire away, I know it can seem really overwhelming xx

Hi @Fivebyfive2 - thanks for the reply! Wowwww can’t believe you’re still waiting for the assessment. I knew the waiting lists are long but thought it might be sooner after a first appointment was a few years ago!

can I ask… what have your appointments covered if no assessment has been done officially yet? Has your son continued with his behaviour or has some eased as he’s got older?

thank you. Xxx

@HallidayJones6779 Ok so our paediatrition appointments have been to keep us "on the books" and discuss his general health. We got a trial vial of melatonin last year to try and help with his sleep. The bad news is we never successfully got so much as a dose into him. The good news is, although still "bad" compared to lots of other kids, his sleep has vastly improved the last few months and it's made all the difference to how we get along day to day. Also at the appointments she checks his height and weight and asks generally how we're doing etc. She organised his blood tests that are part of the overall assessment picture.

Just to explain a bit - at 2.5 the GP referred us to childrens autism services. Due to his age, they bounced us to paediatrics. Then after we'd seen her a couple of times (our second appointment was much more thorough after the mess of the first one) she referred us back to childrens autism. It took 6 months for them to accept the referral and the (30 month) wait for the assessment started at That Point. Hence why we're still waiting. Luckily I managed to get him on a right to choose list this year so we'll hopefully get seen before he starts year one 🤞

As for his behaviour, I'd say it's evolved rather than been entirely grown out of. He no longer screams when I have a shower, but still follows me to the toilet. We can leave him with my parents for a few hours of an evening and he's fine, but he absolutely will not sleep until I'm home to put him to bed. His games have changed, but they're still very rigid and repetitive. School drop offs are indescribably better than nursery ones ever were, but we still need the mornings to go like absolute clockwork, including leaving time to go for a poo right before we go 🤣

We've seen lots of services and done a parenting course and read lots on different parenting methods etc to help us understand him better. He's an awesome little human! If you want any tips or annecdotes just let me know, I might have been through similar 🙂

Thank you so much for the detailed reply! It’s good to have realistic expectations of our first meeting with the paediatrician. Do you have any tips or stories specifically around eating!? I think this is the thing I’m finding most stressful about my little boy. Every meal time feels like such a burden.

what about your boys speech or any delays? Is it more his behaviour rather than his development? My boy doesn’t have any strong behaviour traits, but his speech development and understanding is my biggest concern. Thanks again for taking the time xxx

My son didn't have many words until about 2.5 then it really came on. He does parrot/echo quite a bit, even now he'll often say what seems like an in context (mostly) if oddly phrased/grown up expression and only I know it's word for word from a book or the telly etc.

It's more his behaviour tbh, not violent or unkind but he gets fixated on things, he is very rigid and extremely repetitive. If I'm really honest I think he struggles with empathy but obviously he's still quite young. He's a really anxious little thing, bless him, he needs a plan and struggles with change or transitions. He loves his friends and adores animals, but avoids busy, crowded bits or places that are too loud. He's very sensitive to fabrics and temperature. Struggles to wind down and relax. We often say he should have been born on a farm, just him and his animals, outside all day on the go and then home to his supper 🤣

Food wise I must say, it's not too bad. He is picky, but he likes some pretty decent meals - pasta in tomato and garlic sauce with mushrooms, mushroom korma curry, tomato soup, beans and mushroom with toast, baked potatoes with beans and cheese, chips with vegetable fingers and mushroom pizza. He's obsessed with mushrooms, has them with everything. It's basically part of his personality now! He'll eat fruits, cheese, yoghurts, cereals etc. Our paediatrition said to focus on getting him to the table, enjoying eating with us, regardless of if he was having different food. We've always always ate at least one meal a day all together at the table so I don't know if it's just something he's so used to? I do worry he's quite limited in his foods, but then again just a few weeks ago he started eating beef bolognese sauce with carrots included - the first meat he's eaten in years! So you just never know 😀

Oh and we haven't had ice cream or lollies in the house in 2 years. He gets fixated on them. Chocolate, cake etc he'll ask and be ok if we say no, no real problems. But ice cream/lollies, it was a nightmare. We think it's the cold factor, he loves getting cold. So we decided he can have one out and about but they're never in our freezer.

He watches telly, but has never used a tablet. It's just a potential battle/thing to regulate that tbh I can't be bothered with on top of other stuff we already have to manage.