Should ds be registered with a paed or anything after dx?

[StarlightMcKenzie]

We've moved, twice since diagnosis. DS is in an independent special school where he receives OT and SALT onsite.

However, we have no 'agency' involvement. He's registered with the GP and attended hospital here for Grommets.

Should he be under a paed too? (not that I have need of one except for DLA forms).

okay thanks. No nurse that I have come across.

I guess if I needed melatonin or had other issues that required paed input we'd just have to be referred back there.

It seems to me quite incredible that the pathway is a medical one for dx and then a wave bye bye.

We recently got Dd3 referred back to a Paed, she hadnt been seen by anyone since she was dx'ed 2 years ago.

Her anxiety was through the roof and she was heading towards school refusal so we had to do something.

Luckily the new Paed was very helpful and saw her very quickly. I have also got SALT's and OT's back involved at school too.

The paed who Dx'd DD basically said there is no follow up unless we have specific concerns/needs that have to be dealt with. Awkwardly as we live on a boundary between NHS areas we had to go to one area for the Dx but any further intervention has to be done by the other area. They wrote to the other area to advise of the Dx and we had an acknowledgement to say they had been notified, but since then we have heard nothing and don't expect to.

We've been really lucky since dx. DS has weekly joint appointments with a psychologist and a SALT. We're also under the sleep clinic and have been to a sensory processing group.

we haven't seen a paed since we started the move-to-chase-provision merrygoround 5 years ago!

I do wonder sometimes whether we still should. we have no official/agency involvement at all - not on the disability register, no paed, nothing.

dd1 also gets all her provision 'in-house' at an independent SN school, so we do not officially exist to any disability services.