DLA and child getting better - at which point do I tell DWP?

[Whojamaflip]

Ds2 has epilepsy and asd traits and has been awarded middle rate care and low rate mobility DLA to be reviewed in 2017. I also get carers allowance as a result.

The great news is that on the advice of his paed, we are weaning ds off his epilepsy meds to see if he has grown out of it. Absolutely chuffed to bits and fingers crossed we are successful

The question is - at what point to I inform DLA? Obviously if he is weaned off then he no longer has epilepsy and so doesn't need the care associated with the condition.

Do I tell them we are reducing his meds? Or is it advisable to leave it for a few months after we stop the meds in case it comes back?

The asd is not enough of a problem to justify middle rate on its own and I don't want to be claiming something we aren't entitled to iyswim.

I would definitely wait until you are sure he no longer needs the meds. You will be on high alert once he's stopped taking them, which might actually increase the care he needs.

Suggest talk to the specialist at the next appointment about the odds of more fits. And keep a diary of how much care you give, then compare notes with someone who has a NT dc same age.

We sometimes forget that, while we're delighted with massive progress, the other dc are progressing too. So our dc often remain 'behind' and require substantially more help than their peers.

I would definitely say wait until you can be sure that your DS has indeed grown out of it, then contact and let them know.

Would you say most of his needs are due to the epilepsy or the ASD? It depends on that I would say. He may still meet the same criteria.

Wait. Definitely wait. We waited a year before informing DLA that DD's trachy had been removed, as this was her second trachy surgery so I didn't want to say "yay it's gone!" And then six months she could have had a relapse and we would have had it put back in a third time. So wait and see.