Paediatric appointment

[Fivebyfive2]

Hi all, just looking for some guidance I think.

My son is 3, turns 4 in December and on Monday we have an appointment with a paediatrician. This follows meetings with the HV and a GP last year, who put in the referral and a home visit from a paediatric nurse earlier this year. I called to ask more about what this appointment would be like and was told "the first appointment is usually about an hour" so does this mean it will be one of several? I've been told to take a toy for him to "keep him occupied" during part of the appointment and any notes or anything I want to discuss.

So far I've got a report from his nursery, notes from the GP, a sleep diary and some notes me and DH (his dad) have put together like family history, concerns, questions etc.

Is that enough do you think?

That’s enough. How many appointments there will be depends on what the referral is for and how your local services run.

Hi, me again! We had the appointment on Monday and I just don't know where we stand at all? I'm just wondering if anyone has experienced similar...

The paediatrician was in her 60s and was just really abrupt, I felt so on the spot. She actually said at one point "oh everyone's worried about autism now, just try to enjoy him" I didn't even know how to respond to that in the moment?

She directed me to the sleep charity website that our GP did, but that's really basic and geared more towards general sleep tips that we've already tried.

She made like little noises and wrote stuff down, about his sensitivity to temperature, texture, noise and how he's not really great around other kids, crowds etc. But she didn't SAY anything? I've got no more of an idea of where we stand now at all. She said if he struggles at school it will be picked up there and asked why the letter from nursery was "typed like this?" She did give me a report for them to fill in.

Ds did well, but he was clung to me and looked at me before he attempted to answer anything, even his name etc. And she said it just showed how well he interacts with me? I thought she would ask me things while my mum played with him on the other side of the room or something at first, but it was a tiny office and she sat us all together so I felt really uncomfortable just listing things he struggles with, as if he's not there? He does take things in so I'm really consc of that.

I just felt weird coming out, like she thought I was just mental? Maybe I am! But this hasn't just come from me, our GP and HV flagged things up and so have nursery.

Apparently we'll see her again in 6 months. Nursery have said they'll fill in the form asap and send it off plus give me a copy. His key worker has suggested that after they send it in, I could call and just ask to chat to someone and ask for a bit of clarification about next steps and things.

Would I be ok to do that? I'm feeling a bit lost with it all to be honest! I wasn't expecting a diagnosis there and then or anything like that, but there was no reassurance, no advice or anything that made me feel the appointment was really worth it?

You can call to ask about the next steps, but it sounds like, the next steps are to gather further information from nursery and review DS in 6 months. It isn’t unusual for first appointments to not commit to whether there will be a diagnosis or not. Sometimes it is about gathering information. In future, you can write things down in advance if there are things you don’t want to discuss in front of DS, or you could ask you mum to take DS out for part of the appointment.

When the paed directed you to the sleep charity website did you say you have tried all the strategies listed? It is normal to try sleep hygiene interventions and other strategies before trying e.g. medication.

@YellowRosesWithRedTips yep I did say oh we have looked at it before but it seemed very generic, like try a bath before bed (no help as D's will only have cold baths and they stimulate him) or have a solid routine (we have one but it doesn't stop the frequent night wakes and split nights) She then didn't offer any more advice or resources.

Maybe it is me partly, I'm not even sure what I was hoping for really. Not medication as from what I've read it's very hit and miss, especially with night waking and not necessarily a diagnosis even... Just some understanding that things are though and maybe some advice we haven't tried off our own back via winging it/looking online?

I wanted to say, but couldn't get the words out with D's right there bless him, that although we've come a long way in the last year, it's getting exhausting just finding strategies and routines to get through things that I see children half his age just "doing" like it's nothing - like going in o nursery, birthday parties, new play places, going to sleep. And I know alot of kids are just sensitive or struggle with certain things (D's has a good vocabulary, is PT, eats relatively well) so maybe there isn't a diagnosis and he's just a really sensitive kid. But I just want to know, to know we're doing everything to help support him. And I left that appointment thinking we'll, maybe it's me then? If that makes sense?

Sorry for the long rambling reply!

I think you need to be more direct. For example, you should have followed up the sleep conversation by e.g. asking directly for a referral to a sleep clinic or to trial medication or directly asking what else you can try.

If DS is struggling at nursery, what support are they providing? Does DS have an EHCP? Has DS had SALT and OT assessments? Does DS use ear defenders?

What kind of new play places are you meaning - for many DC with additional needs busy, noisy places can be overwhelming for some DC with additional needs and expecting them to cope like typical peers sets you and them up to fail. Can you rethink where you take DS?

Nursery are really good tbf, along with our routine at home, he always has his key worker come to get him inside and she always has his favourite book ready. Once he's settled he's quite happy there, he knows the routine and they support him really well.

He has ear defenders and we only go to places like soft play etc in the week, in term time, where it's quieter so he's not overwhelmed. We show him pictures online of new places and once there, we always know there's a chance he won't want to stay and that's fine. He loves being outdoors, so we spend lots of time in parks, by streams, exploring "dens" and things.

I probably do need to be more direct really. It's not something that comes naturally to me but I'm getting better at it. Just got a bit thrown this time!