Saturday, August 20, 2011
Josiah has been on his target does of Keppra for a week now, and we are still not seeing any improvement. In fact, at times it seems he is worse than before the Keppra. Also, over the last few weeks, he has been having what we think may be myoclonic seizures all throughout the night. He will be fast asleep, and then his limbs will begin to stiffen, relax, and continue on sometimes for a minute, sometimes for a few minutes. He is booked in for another EEG on this coming Friday (this one will be an all day EEG), which will hopefully shed some light on the changes we have been seeing lately in his seizures. On an exciting note, he is on the verge of walking. He is getting very brave, pulling himself up on things, and then pushing back to see how long he can stand. He can also walk about 7-8 steps between Caleb and I. Its great, and he is having fun!!!
Subscribe to:
Post Comments (Atom)
Hi,
ReplyDeleteI enjoyed reading Caleb's story. We live in Oxfordshire, UK and have a seven year old boy with hydrocephalus and epilepsy. Although our son's seizures have probably been happening for about 3 and half years they weren't diagnosed until he had a status epilepticus episode this spring.
We're at a similar stage to you of trying lots of different medications to see what might work to control his seizures. He is due an MRI in September to try to pinpoint an area that might be causing the seizures, but the neurologist has said that they might be hard to control with medication.
However, at the moment he has been 4 weeks without a seizure. We're not sure if it's the medication or just a natural gap. After a pronounced seizure he can have up to 12 weeks symptom free and his last seizures were a 20 minute complex partial followed by two 5+ minute tonic clonics.
It's great that Caleb is shunt free so far - the best shunt is definitely no shunt. James has been quite lucky with his. He had three revisions between the ages of 2 and 3 and a half, but none since.
I look forward to hearing how Caleb does. Some people seem to have pretty good results with Keppra. It's what our neurologist is considering next - but he did say he'd be a bit cautious because it seems to cause depression in quite a significant number of patients.