Just back from Consultant appointment.

[lou031205]

We saw the consultant today with DD1 (3.5, GDD, epilepsy).

The MRI result is in - It showed that DD has 'subtle but extensive cortical dysplasia'. The paed is going to ask his neuro colleague to take a look.

He has suggested we apply for a blue badge, and and is referring us/DD to the learning disbalities behavioural unit, and is also referring us to the SN social workers re: respite type stuff.

He asked if we were getting high rate DLA for both parts. We get high rate care but no mobility. He said it might be worth appealing - shame as it is too late now. He never mentioned DLA before today, at all, and the award came through in March. Never mind.

Does anyone know anything about cortical dysplasia, at all?

So is the dx a good thing then Lou? Its good that he is referring you to the relevant departments though. Lets hope you're not waiting long.

RE DLA, do you not have 12 weeks to appeal?

Hi5, I don't think it is a diagnosis, as such, but more a 'feature'.

He is going to ask a neuro colleague from Southampton to look at the MRI, and he is going to go back to the geneticists and ask them whether they need to consider other syndromes, etc.

But, yes, good that we now know there is definitely a reason for her issues, and not bad parenting .

I thought DLA appeal limit was a month?

I've just copied this of the directgov site

Deadlines
You have one month:

after getting a decision to ask for it to be explained, reconsidered or to appeal
after getting a reconsidered decision to start an appeal
A late appeal may be accepted if you have special circumstances that prevented you appealing in time, but not if more than 13 months have passed.

I'd certainly say you can appeal. If not, you can submit a new claim form in.

Thanks Riven. I suppose it is just wait and see.

Re: the badge, I have downloaded the form and filled it in, but don't hold too much hope, tbh. The website says "You may qualify if:

• You have a permanent and substantial disability which means that you are unable to walk or have very considerable difficulty in walking.

You do not qualify if:

• You have a psychological disorder, learning or behavioural problems. This will not normally qualify you unless their impairment causes very considerable, and not intermittent, difficulty in walking. "

I have stated that DD trips, falls & stumbles, has no sense of danger, runs away unless restrained, stops if underfoot texture is wrong, sudden noise or falls.

I hope that, with the consultant back-up will be enough.

5, thanks for that. Trouble is, I am a bit scared they would take the high rate care away, & still not give us the mobility because she isn't 'severely mentally impaired'.

The consultant said "surely she qualifies for middle rate mobility" - er, no such thing...

The paed said to send off the form, then the blue badge people contact him direct. 'Tis Hampshire

If you reapply, you only need to fill out the mobility part of it as the care part hasn't changed. We done this last year when we applied for mobility when DS2 turned 3.

If it helps, we originally got the wrong DLA rate (care and mobility) but we didn't know it should be higher, then paed pointed out we should be getting higher rate, we were out of time to appeal but the paed wrote for us and we got the DLA upgraded no problem.

Sorry can't help with cortical dysplasia.