Joel is 10 and weighs 22kg. He takes 10mg bd (so 20mg/day). He has been on this dose for a number of years now. Joel also takes Epilim and Tegretol to assist with seizures (topomax was unhelpful for him). Joels true seizure like activity started at 4 1/2 years old. Prior to that plenty of unilateral and bilateral AHC attacks and absence seizures (we think). At that age although he had some attacks that affected o2 levels and breathing he didn't have as many attacks that affected breathing as he does now- that has certainly increased.
Hope Tony is ok now!
--- In firstname.lastname@example.org, Vicky Azaksken <azakoul@...> wrote:
> Hi everyone,
> Well, we got got out of the hospital again...Tony was having hemiplegia attacks on his right side from the 13th-15th of this month and then on the evening of the 15th it switched to the left side til the morning of the 19th .Suddenly without warning Friday afternoon he threw up a bit of bread and he looked pale,his O2levels dropped to 70%.We took him to the clinic near our home where he was given Epistatus.He had alternating seizure like movements for about 40 minutes.He came out of them while he was in the ambulance being brought to the hospital.
> Tony will be 5 this June.He weights 15 kilos(33 lbs) and takes a total of 120mgs of TOPAMAC and 5mgs of SIBELIUM a day. I'd like to know if any of your children take a larger dose of sibelium since Tony seems to be having a hard time with many trips to the ICU these past months (being intubated 3 times) seizure like episodes,low O2 levels and so on.His doctor is out of the country at the moment and I don't know what to do.
> Thanks again,Vicky & Tony
> [Non-text portions of this message have been removed]