i feel like they dont believe us:(

[trace2]

after 3 years and things still on going i had enough, we been to see our local community pead and he asked us if any one else as seen dd seizures ? tbh we used to video every thing she did which was unusual , but after 3 years we stopped as we got no where with them, she as drop attacks, blanks, some other kind of nasty movements too. but as she only as at least one of the things every few weeks they dont want to medicate ( which i understand plus her two eegs was clear , even though she didnt have a seizure while on eeg.

anyway some days dd can sound confused and dont walk, and losers her speech some days also she can go blue, we have no idea why, but because her mir came back clear so did her heart scan the community pead asked us if anyone as heard or seen any of this other then us so he can phone them, which the child minder as but am so annoyed its like he dont believe us even though she as been brought out by a&e and stopped breathing there too but he says its not been recorded. can i ask for reports from a&e i need to see my self?

i feel like walking away from all of this but my dd still needs help and feel very let down by him can it still be neuro related even the orthopaedic doc and heart doctor says they think its still all to do with her head? just dont know where to turn or who to ask for help.

I haven't got much advice really.. But if your CM has seen what is going on.. Do use them and get the pead to talk to them.

We got a lot further on with things when other people where saying the same thing, independantly , as we had been saying about ds2 for quite a long time ( AS/asc)..

Hi trace - its crap isn't it. Our DS was in our local hospital having seizures every half hour and they did nothing. For six days. And the paediatrician told us it was maybe behavioural!!!

He had an eeg tho which we had to push for and had seizures whilst there, and once the neurologist saw his results he was rushed to a specialised childrens hospital and is now on meds and doing well. DS also had an MRI scan done quickly after this too.

Do you have a helpful gp or health visitor that could maybe help with a referral to a paediatric neurologist? It wasn't til we got to the right person that anything happened.

Its horrid when you feel like no-one is taking you seriously . Good luck.

hear hear justabout.

thank you all yes i will use the childminder and yes we have videos but not the new ones and we have a nuero too he as seem them too but dd is very unusual we been told , dont follow the book of seizures but i carnt change them to look like they do in the book. how do i ask for her records from hospital?