How is you son lately? Just been watching these clips as my brother has these, all the hospital do is give him drugs that don't work and nothing shows on tests. I feel so bad for him, he is such a sweetie though.
an update after far too long. we got the results back from MRI scan - he has a cyst 4cm x 3.5 x 3cm on his left temporal lobe - I feel like we have gone steps backwards as I feel lost and ignorant again (before I felt like I understood). I have been told nothing else can be done for now as they just want to monitor size of cyst.... in the meantime the first thing google brings up about cysts on the left temporal lobe is that is has been linked to psychosis.......can anybody rationally comment?
@lucishand Sorry. It is rough. That's the kind of seizures I had from 14 months to 25 years. Partial Complex started because of a scare on the left temporal lobe. Meds didn't work. Surgery was the solution for me. Recovery was rough for about 6 months but the best thing I ever did. I'm 38 now and went from 15 seizures a day to 0 a day. I did figure out one thing I must avoid Caffeine including chocolate. Try taking him off of that completely and see if it helps. Best wishes to you.
@lucishand Don't listen to google... I've battled this for 15 years, 90% of info is just wrong or misleading, every epileptic case is very very different... I had the same situation, Cyst, mine was located between lobes perfect center of my brain, no options for anything... no route in. You've got that advantage if it comes to it. but do not rush any judgements. My seizures are typically located in the Left Temp lobe also i'm assuming, Find out the location of the seizures themselves, EEG.
@prae4nosa if it hasn't been done before and it should have. Docs always say to keep up your normal medication levels. My EEG's showed no results 5 times, until I took a day or so off my meds,then I had a seizure while hooked to the EEG. This is not a recommendation by any means, but for me it was the only way for progress. The Cyst I talked about before happened to be sheer coincidence.That doesn't sound as likely with your case but who knows. Over time Progress becomes the goal.
Neurologist seem to be very slow to push researching their patients, they much rather use a medication that will always only treat the symptoms of epilepsy. you have to push to get the information so you can understand what type epilepsy one might have, it's multiple forms many times. Be stubborn, push for info. research the Left Temp Lobe, find out what processes are done there, if there is a cyst putting pressure on those areas, all those things can/will be affected, typically w/o any damage.
I am a med student (first year, so I don't know anything). My teacher was lecturing about seizures, which is why I looked up this video. He said that there is a period preceding seizures (up to a day before) called the preictal or prodrome period that is sometimes characterized by irritability. According to him, some families feel like they actually want their family member to hurry up and have the seizure so they will stop being so cranky! You should talk to a doc about this.
@student2341 thanks for your comments - they were really appreciated and sorry it's taken so long to reply. an update after far too long is that we got the results back from MRI scan - he has a cyst 4cm x 3.5 x 3cm on his left temporal lobe - I feel like we have gone steps backwards as I feel lost and ignorant again (before I felt like I understood). I have been told nothing else can be done for now as they just want to monitor size of cyst....
Wow Id love to speak with you more about the behavior link. My son started havign what we thought were panic attacks from age 4 1/2. However now he's six and the panic attacks are looking more like seizures (we are having him tested in 3 weeks). He was a perfectly behaved boy up until these episodes began.
i am so sorry for you that you also have to go through this with your child too. i am so grateful for your response - it gives me the strength that i am not alone and that one day we'll start moving forward with this medically. hopefully soon!
u seem like an amazing mum :) x
TeenOnTheMove 3 weeks ago
poor boy. his eyes are beautifull!
misswilline 2 months ago
How is you son lately? Just been watching these clips as my brother has these, all the hospital do is give him drugs that don't work and nothing shows on tests. I feel so bad for him, he is such a sweetie though.
shnookumlooks 3 months ago
an update after far too long. we got the results back from MRI scan - he has a cyst 4cm x 3.5 x 3cm on his left temporal lobe - I feel like we have gone steps backwards as I feel lost and ignorant again (before I felt like I understood). I have been told nothing else can be done for now as they just want to monitor size of cyst.... in the meantime the first thing google brings up about cysts on the left temporal lobe is that is has been linked to psychosis.......can anybody rationally comment?
lucishand 7 months ago
@lucishand Sorry. It is rough. That's the kind of seizures I had from 14 months to 25 years. Partial Complex started because of a scare on the left temporal lobe. Meds didn't work. Surgery was the solution for me. Recovery was rough for about 6 months but the best thing I ever did. I'm 38 now and went from 15 seizures a day to 0 a day. I did figure out one thing I must avoid Caffeine including chocolate. Try taking him off of that completely and see if it helps. Best wishes to you.
hjs385s 6 months ago
@lucishand Don't listen to google... I've battled this for 15 years, 90% of info is just wrong or misleading, every epileptic case is very very different... I had the same situation, Cyst, mine was located between lobes perfect center of my brain, no options for anything... no route in. You've got that advantage if it comes to it. but do not rush any judgements. My seizures are typically located in the Left Temp lobe also i'm assuming, Find out the location of the seizures themselves, EEG.
prae4nosa 6 months ago
@prae4nosa if it hasn't been done before and it should have. Docs always say to keep up your normal medication levels. My EEG's showed no results 5 times, until I took a day or so off my meds,then I had a seizure while hooked to the EEG. This is not a recommendation by any means, but for me it was the only way for progress. The Cyst I talked about before happened to be sheer coincidence.That doesn't sound as likely with your case but who knows. Over time Progress becomes the goal.
prae4nosa 6 months ago
Neurologist seem to be very slow to push researching their patients, they much rather use a medication that will always only treat the symptoms of epilepsy. you have to push to get the information so you can understand what type epilepsy one might have, it's multiple forms many times. Be stubborn, push for info. research the Left Temp Lobe, find out what processes are done there, if there is a cyst putting pressure on those areas, all those things can/will be affected, typically w/o any damage.
prae4nosa 6 months ago
@lucishand So sorry for your boy. they cannot opperate the cyst out of the brain? Is it dangerous?
eejoon508 4 months ago
I am a med student (first year, so I don't know anything). My teacher was lecturing about seizures, which is why I looked up this video. He said that there is a period preceding seizures (up to a day before) called the preictal or prodrome period that is sometimes characterized by irritability. According to him, some families feel like they actually want their family member to hurry up and have the seizure so they will stop being so cranky! You should talk to a doc about this.
student2341 9 months ago
@student2341 thanks for your comments - they were really appreciated and sorry it's taken so long to reply. an update after far too long is that we got the results back from MRI scan - he has a cyst 4cm x 3.5 x 3cm on his left temporal lobe - I feel like we have gone steps backwards as I feel lost and ignorant again (before I felt like I understood). I have been told nothing else can be done for now as they just want to monitor size of cyst....
lucishand 7 months ago
Wow Id love to speak with you more about the behavior link. My son started havign what we thought were panic attacks from age 4 1/2. However now he's six and the panic attacks are looking more like seizures (we are having him tested in 3 weeks). He was a perfectly behaved boy up until these episodes began.
jmacdow 11 months ago
i am so sorry for you that you also have to go through this with your child too. i am so grateful for your response - it gives me the strength that i am not alone and that one day we'll start moving forward with this medically. hopefully soon!
lucishand 1 year ago
I understsand what yo'uve written here. My daughter also has behaviors. Prayers you get a diagnosis honey!
girlchristian1 1 year ago