What to expect at community peads first appt?

[IglooisnowinSheffield]

Hi everyone, DD just turned 2, is seeing community pead for first time next week. She was seen by developmental registrar who referred on. She has been delayed in meeting milestones and has very low muscle tone, although walking unaided. She says about 5 words. I have no thoughts on diagnosis and I'm aware any diagnosis could be a long time in coming.

Just wondered what to expect at the appointment from anyone who has had one? Happy to answer any questions, just didn't want to write an essay in my OP

My experience with paed is that you do a lot of talking. Appointments in the early days with ds I kind of expected them to tell me what was wrong, I found out it doesn't work like that. I now write up a list of where he is at under headings like vocabulary, understanding, social/emotional, motor skills etc. I hand the list over because I'm generally chasing around after him and we discuss and clarify the points. I used to be a teacher so I used to also go in and like my teacher days say lots of positive things first. I don't do that anymore because then you end up with a report which says 'he is settling better at night' when in actual fact he's getting up 6 times in the night rather than 7'. Ask what tests might be available ie genetic, metabolic, MRI, x ray, hearing and sight tests. Ask for appropriate referrals. Follow up any support groups even if they are not always relevant or that great sometimes you can get links to more useful services. I think this does depend on where you live though. Not much in the middle of nowhere where we live.

My ds is coming up to 5, from the age of 2 he was labelled as having global developmental delay. Paed app last week she talked about him as having learning disability. He's a very happy sociable little boy.

I hope it goes well for you! Hopefully some more will respond to you cause I'm sure I will of forgotten something.
Stay positive...my ds even with his problems can still surprise me. I sometimes think he knows more than he's letting on xxx

Thank you Hedgy, especially the advise about being too positive! We have already had some physio and orthotics input and on reading the reports it doesn't sound like DD they are talking about. I have a really positive outlook and think DD is doing fantastic BUT she is delayed and I don't think I'm helping by pointing out the good points. I don't want to speak negatively infront of her - I know that's silly - so writing it down is a great idea.

I guess I've been concentrating on what she can do, not what she can't. Cerebal Palsy has been mentioned so not sure if they will follow this path or look for other reasons.

She's just so adorable I'm blinkered by her smile but obviously want the best for her. Thank you

Our first appointment was mostly me talking about where ds was at, when he met his milestones etc. She also did some small tests with him (jigsaw, stacking blocks, drawing line etc.). We were already referred for salt and ENT. Ended with her saying she would see me in a few months. No answers or dx (still no answers or dx 2 years and quite a few assessments further on).

Thank you both, the appointment is short notice although we have waited ages if that makes sense, DH is working away and having to pull all resources to get child care for my older two so will be going in my own.

I have videos of her so will put them in one file so I can access it easily, she is extremely clingy.

Also the appointment is right after her nap so she will be at her 'best'. Would it be a mistake to keep her up so she is at her 'worst' or will that help no one? When I say worst she isn't a grumpy child it's just her balance/co ordination are quite affected by tiredness.

She would be very grumpy if I woke her early. She's all or nothing when it comes to naps!

Hi, our first appointment with the paed was very much us talking about what DD could and couldnt do (she had just turned one). We were referred straight away for eye and hearing tests and an MRI and all were completed within 6 months. I am of the opinion that any child who is delayed should have an MRI but I understand that it is very different area by area. Two years on, she has defied all expectations but we really had to push for the tests and services at the beginning. There is a facebook group for children who are undiagnosed called SWAN (Syndromes without a name). I am at work so cant link to it but I know people who have found it invaluable so would suggest a Facebook search for it.