Just had consultant paed apptmnt - advice needed

[debs40]

Hi

I?ve posted before about DS1 (6) who has sensory and some routine issues ? largely to do with clothes and food (very limited diet, lots of problems with shoes and we?re down to one pair of pants and socks he will wear!). He seems to socialise well although there are some limitations. He can?t ride a bike (can?t push the pedals) or coordinate to swim. He is a bit malcoordinated. He is doing well at school generally

Anyway, we saw the community paediatrician in March. She said there would be a lot of investigation before they stuck a label on any child ? which I completely agree with (I?ve heard some horror stories here of people being ?diagnosed? on the telephone!). She referred for SALT, occupational therapy and to the hospital to see a consultant paediatrician.

We saw him yesterday. He spotted the low muscle tone and hypermobility too and said OT would help with sensory issues but not to push changes of clothes etc, just encourage etc. It was hard to talk as DS was with us and the consultant paed wasn?t the best communicator (not just a language problem either). He suggested referring to CAMHS for a psychological consideration of the sensory stuff, saying that concerns about sensory issues can become wrapped up with psychological problems of avoidance etc which I can see.

I asked him whether these were stand alone issues and he just said ?I can see what mum is thinking, lets? see what the OT and SALT say?. He was quite reassured by his ability to speak with him and give eye contact.

Anyway, upshot is I;m not entirely sure what the purpose of the visit was yesterday?? Anyone else been referred on like this? Also has anyone had a psychological assessment like this?

I?d be grateful for any advice

Thanks

we have always seen the paed as a referral tool. tbh they are really only a gateway service for us. our first paed explained that the therapists etc would always be more important, and if necessary, he would provide the 'link' and connection to dx.

he sounds as though he is covering all bases and getting lots of info before he may or may not dx - exactly as it should be!

have you had your therapists assessments yet? they are much more useful, honest. sometimes i wonder why i even bother taking dd2 to see the paed lol he'll do his bit and then probably let the comm paed carry on. does he want to see ds again?

Thanks for that. I thought that's what it must be. He didn't say he needed to see him again and I wondered what the process was - who was 'in charge' of the set of assessments and who made any diagnosis etc.

Do the therpaists feed back to the paediatrician?

yep - ours usually talk through stuff with us, and then the paed gets copies of reports (we do too). paed should get a copy of their assessment report (they will obviously all do their own flavour) the paed's job is to read the reports (this can sometimes prove problematic lol - normally they do it when you turn up for the appointment rather than before. ) - but i guess they are busy...

when you see all the others, just double-check which paed they are sending reports to - i would ask them to send them to both the comm paed and the consultant, that way everyone should have a copy...

that was really garbled, sorry

Mine were still pre-school age when they first saw the Paed but the system here is fairly similar. The Paed refers on to other people to make their own assessments and then the Paed makes a decision based on all the reports.

Both of mine saw the Child Psych as part of their multi-disciplinary assessments.

have you had an ed psych report done through the new school? i can't remember?

No, the psych report is being requested through the paediatrician

Thanks for all this, it makes it alot clearer!!

ok - was just going to say if you've had an ed psych report done, take that with you to camhs. they probably won't want it, but it might save time. irrelevant though!

Ta madwoman much appreciate your help!

Glad you seem to be making progress

Wc always go to our Paed for referals elsewhere - they way I see it is that she is the one with all the power, she gets to give out the diagnosis but she uses the findings of others that we see - such a SALT and OT to help her decide. I would much rather it be like this than seeing him for two minutes and making up her mind which is something that I have heard of happening too.

You might have seen my post about my daughter. She was diagnosed with diplegic cerebral palsy in our first meeting with the consultant at 10 months old. We have cried and cried and lived with the diagnosis for 5 months - only for the consultant to change her mind today and undiagnose the CP.

It's much better IMO that they involve the therapists and take their time - our physio has been saying for a while that she doubted that our baby had CP at all.

Good luck x

Thanks. I completely agree and would hate anyone to rush to diagnose. I have no wish to stick a label on my child unnecessarily or without good grounds!!

The process was not explained to me so I just wondered who was leading it really so I could have a 'plan' in my head for what was happening.

You guys have been really helpful

Anabella ..that's awful. Careless thoughts and words really affect lives. I hope you;re on the right track now.