thank you for your comments on the last post. i can’t tell you how much it means to me.
i was able to get a bit more information out of my mom last night. when M was having his seizures before (when there was still part of the tumor present), the EEGs would find that the seizure activity would be localized to the area near the tumor. now, it looks like the activity is no longer localized, and occurring throughout his brain.
no one has noticed any absence seizures, but this does not mean that he is not having them. M is essentially an only child – our other brother and i are adults, and haven’t lived at home since he was an infant. when he is at home, he spends a great deal of his time playing by himself. this makes it very hard to monitor for those 30 second periods when he just zones out in a seizure. when he was younger, there were other symptoms that would precede a seizure: his nose would “feel funny”, and he would often vomit or feel nauseous. in fact, for a long time his doctor assumed he was lactose intolerant or had other digestive issues. his tumor/the epilepsy wasn’t diagnosed until there was an incident when he lost control of his bladder. but there is nothing to say if he would have these symptoms again, or if there may be other small things to indicate when a seizure is about to occur.
we aren’t totally sure what symptoms to look for now. mom said he was twitching in his sleep during the EEG, and often does at home – it looks like this is what his new seizure looks like. but that doesn’t have to be it. he could have absence seizures again, or he could begin having grand mal seizures. i think that is the part that scares me most – we might not be able to tell what’s going on until it gets more serious.
they prescribed M lorazapam, and gave him a couple of emergency doses of something else i don’t remember. he will have to keep one of these at home, and one at daycare/school. if he has any type of seizure that lasts more than 5 minutes, or more that one seizure an hour, this emergency med can just be put in his mouth and dissolve. he will not be able to play certain activities in gym or recess, including football, climbing, or swimming without someone keeping a constant eye on him. he has to always have a water bottle with him and has to start staying better hydrating that he has (side note: in over 5 years, no one EVER told us that there was a link between dehydration and seizure activity. something so little and safe that we could have been doing all along).
the doctor yesterday told mom that it is not surprising that the seizure activity has returned. as long as his brain is continuing to develop, it may go away and return numerous times. the fact that the activity is no longer localized to the scar tissue or where the tumor was may indicate that this is not necessarily related to tumor regrowth. it sounds like this my be the best outcome we can hope for. and honestly, i think my parents and M can deal with epilepsy, but i don’t know what will happen if the cancer has come back.
M will go back for an EEG/neurological exam in 3 months to see if the medication is effective, and to make adjustments if needed. he is already scheduled for his quarterly MRI at the end of september, and mom is going to try and convince the insurance company to move that up (right now they only pay for quarterly since his MRIs have been better than perfect for over 3 years). she is also going to try to get in to see his pediatrician and his oncologist as soon as possible to share this news with them. she is also going to call his school and see if there is a teacher with epilepsy experience he could work with, or if they can provide training to the teacher he has been assigned.
the most important part of the update though, is M seems to be handling this all very very well. he doesn’t seem to make the connection that last time he was seizing it was caused by cancer. he does understand that even though some people die from cancer, he didn’t, and his cancer went away. he doesn’t seem upset by the fact that he has restrictions in gym/recess. it actually sounds like the part that bugs him most is that he has to drink more water – he was adamant with the doctor that he drank water ALL the time 🙂
thank you again for all the comments and support. i don’t expect there to be any new news for a while, but i promise that i will share anything as soon as i can.