Wow we have come so far since 7 months ago! I am pleased to announce we have a fantastic team of people now, a ped neuro, disability consultant, epilepsy nurse, physio, senco, health and safety etc. Unfortunately Charlie's seizures are getting worse, has up to 100 a day and has every seizure type going :-( Charlie has been diagnosed with dravet syndrome, a severe, life limiting form of epilepsy x
I hope they get him diagnosed soon. Do they at least have him on seizure meds (AED's) yet? I've been diagnosed with Epilepsy and am still considered a complicated case but my epileptologist is not giving up on trying to help me. So never give up. :)
@SalemRose88 The doctors are useless, they were supposed to ring today with an update on the results from an emergency EEG and even though i rang to chase them up they didnt even bother to ring!
Feel very let down :( our next appt is 4 weeks away yet he has these 5 times a day. They have refused to medicate him yet due to his age, we have yet to see a doctor who specialist subject is epilepsy ... its a joke!
I am pleased that you have a good doctor and they are looking after you x
@AimeeJ1985 So sorry to hear that the doctors aren't helping y'all very much. I hope they start to help him really soon. I too have multiple types of seizures and I am still having daily seizures but I am doing a lot better than I was.
Wow we have come so far since 7 months ago! I am pleased to announce we have a fantastic team of people now, a ped neuro, disability consultant, epilepsy nurse, physio, senco, health and safety etc. Unfortunately Charlie's seizures are getting worse, has up to 100 a day and has every seizure type going :-( Charlie has been diagnosed with dravet syndrome, a severe, life limiting form of epilepsy x
AimeeJ1985 9 months ago
Your poor baby. He's adorable. I hope he is doing better. So sad to have this conditon.
pinkfoundations 9 months ago
I hope Charlie is doing better. Did you finally get a diagnosis? My son is showing the same behavior and they cant tell us what is happening
marrozendal 1 year ago
I hope they get him diagnosed soon. Do they at least have him on seizure meds (AED's) yet? I've been diagnosed with Epilepsy and am still considered a complicated case but my epileptologist is not giving up on trying to help me. So never give up. :)
SalemRose88 1 year ago
@SalemRose88 The doctors are useless, they were supposed to ring today with an update on the results from an emergency EEG and even though i rang to chase them up they didnt even bother to ring!
Feel very let down :( our next appt is 4 weeks away yet he has these 5 times a day. They have refused to medicate him yet due to his age, we have yet to see a doctor who specialist subject is epilepsy ... its a joke!
I am pleased that you have a good doctor and they are looking after you x
AimeeJ1985 1 year ago
@AimeeJ1985 So sorry to hear that the doctors aren't helping y'all very much. I hope they start to help him really soon. I too have multiple types of seizures and I am still having daily seizures but I am doing a lot better than I was.
SalemRose88 1 year ago