well after nearly 3 years we now know she having seiziures

[trace2]

been to neuro today and they have said yes she is having seizures its took 3 years next month to come to this and they say her development as been affected i did know this and have kept telling them how she loses her speech, forgets words, some days cant walk and so on, they going to do an other mir as the last one was at 5 months .

Trace. So sorry it's taken them so long to figure this out. Hopefully they'll get to the bottom of it all.

How long did they say it will take for an appointment to come through?

Well done for your persistence trace

about 6 months because she as an opp for her tonsillitis and anodes out on 24th this month, they going to do some more genetic testing now as she so unusual and as many different variable problems . we have been so worried about her walking , speech this last month too.

Poor little thing

Was it you who linked a video of your DD walking with her dad?

mm not sure i have done some i may be wrong

that's so shitty trace as I know you have been asking them about this for years and years, I remember your first posts about the posturing etc.

Trace so sorry you and Chloe have had to go through this, and it has taken them so incredibly long to acknowledge what you have known for a long time. I hope that at least this means you get more help. Meanwhile I just wanted to add my support, take care x

trace2, I'm so sorry this has taken so long. At least now you have a diagnosis to work with going forward.

thank you all , the trouble is she still as un dx whats causing all her problems but at least now we have one answer for some of the things she does!

Well, thank God she has got you Trace, because you have fought on and on when no buggar else in the medical profession would help you.

It's crap, I am sorry, but you know what you are dealing with now (well a bit of it) and bloody well done for not being beaten by them.