Star_Mummy
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Hi!
My name is Tara and I am 21. I have a four year old son, Sean who has Myoclonic-Astatic Epilepsy. I also have a 7 week old baby girl, Tiarna. I live in sunny Australia.
Sean started off with Febrile Convulsions after his Measle Mumps Rubella immunisation. He was put on Phenobarbitone and Epilem to try and control them to no avail. He had grommets inserted to control his ear infections which in turn stopped his convulsions for 9 months due to him not having any tempretures during that time.
Late last year he started having afebrile convulsions and finally after 2 previous EEG's and an MRI he had an abnormal EEG reading. A few months after this we got the diagnosis. His fathers side of the family has a very strong history of epilepsy and so far it seems that Sean's is the worse out of all of them.
Sean also has autism and has severe relapses with his behaviour, language, motor skills and many other 'normal' behaviours. I never know what he is going to be like through the day. It all depends on how many seizures he has.
So far we have tried Phenobarbitone, Epilem, Tegretol, Lamictal, Dilantin and Topamax with no real reduction in his seizures. At the moment he is on:
640mg Epilem
75mg Topamax
180mg Dilantin
20mg Daily oral steroids
500mg monthly IV steriods.
He suffers from Tonic Clonics, absence seizures, myoclonic-astatic seizures, partial seizures and Non Convulsive Status. He really is a mixed bag lol.
That is pretty much a brief history of Sean lol. I look forward to getting to know you all as I dont know anyone to talk to about Sean apart from his Drs but I want personal opinions and suggestions not just medical.
Thanks for reading this and as I said earlier I look forward to talking with you all.
Tara.
My name is Tara and I am 21. I have a four year old son, Sean who has Myoclonic-Astatic Epilepsy. I also have a 7 week old baby girl, Tiarna. I live in sunny Australia.
Sean started off with Febrile Convulsions after his Measle Mumps Rubella immunisation. He was put on Phenobarbitone and Epilem to try and control them to no avail. He had grommets inserted to control his ear infections which in turn stopped his convulsions for 9 months due to him not having any tempretures during that time.
Late last year he started having afebrile convulsions and finally after 2 previous EEG's and an MRI he had an abnormal EEG reading. A few months after this we got the diagnosis. His fathers side of the family has a very strong history of epilepsy and so far it seems that Sean's is the worse out of all of them.
Sean also has autism and has severe relapses with his behaviour, language, motor skills and many other 'normal' behaviours. I never know what he is going to be like through the day. It all depends on how many seizures he has.
So far we have tried Phenobarbitone, Epilem, Tegretol, Lamictal, Dilantin and Topamax with no real reduction in his seizures. At the moment he is on:
640mg Epilem
75mg Topamax
180mg Dilantin
20mg Daily oral steroids
500mg monthly IV steriods.
He suffers from Tonic Clonics, absence seizures, myoclonic-astatic seizures, partial seizures and Non Convulsive Status. He really is a mixed bag lol.
That is pretty much a brief history of Sean lol. I look forward to getting to know you all as I dont know anyone to talk to about Sean apart from his Drs but I want personal opinions and suggestions not just medical.
Thanks for reading this and as I said earlier I look forward to talking with you all.
Tara.