patjam
11-07-2004, 05:18 AM
Hi
My son James has just been diagnosed with generallised seizures and been put on CARBIMAZEPINE 3-5 MIL TWICE aday at the moment he is a very scared little boy and constantly asking what the noises are or says he's scared all the time and i do mean all the time also smells things that are not there or put it one way no one else can smell them,he also has common varible immune deficentcy(spelling?)this may or may not be connected.
His seizures often start by hearing a noise or smell also see's things going round in circles (awera)and gets so scared and not know what is happening to him or aware of what is happening to him that after the initial upset aften takes a while for him to settle down again these episodes often happen through out the day or night and inbetween he seems ok.
He has only been on the med for three weeks has had an EEG which was normal but a CT SCAN showed a shadow on part of his brain.
Should his med be alterd and or anyone can tell me if he is still haveing seizures because this is really affecting his life in all sorts of ways along with the other condition he has.
Is this med likely to affect his schooling ie learning ability/social life etc.
Any info that anyone has on all aspects of this condition would be good as to how it affects the person and thier family as we have been given next to no info .
Thanx pat
worried mum
My son James has just been diagnosed with generallised seizures and been put on CARBIMAZEPINE 3-5 MIL TWICE aday at the moment he is a very scared little boy and constantly asking what the noises are or says he's scared all the time and i do mean all the time also smells things that are not there or put it one way no one else can smell them,he also has common varible immune deficentcy(spelling?)this may or may not be connected.
His seizures often start by hearing a noise or smell also see's things going round in circles (awera)and gets so scared and not know what is happening to him or aware of what is happening to him that after the initial upset aften takes a while for him to settle down again these episodes often happen through out the day or night and inbetween he seems ok.
He has only been on the med for three weeks has had an EEG which was normal but a CT SCAN showed a shadow on part of his brain.
Should his med be alterd and or anyone can tell me if he is still haveing seizures because this is really affecting his life in all sorts of ways along with the other condition he has.
Is this med likely to affect his schooling ie learning ability/social life etc.
Any info that anyone has on all aspects of this condition would be good as to how it affects the person and thier family as we have been given next to no info .
Thanx pat
worried mum
Sponsor
buliem
11-07-2004, 08:38 PM
Hi Pat,
My 9 year-old son is fairly recently diagnosed too. He has generalized seizures also but at this point they are only petit mal (absence) He's on 750 mg of depakote. It was recently increased from 500 mg. He's still having seizures daily just not as many. He will most probably need another increase in meds but we don't go back to the nero until the third week in Dec. Anyway, I don't know much about the med they are giving your son but it could be that it may need to be upped or the med may need to be changed. It's pretty early in the game. I'm sure the docs want to make sure your little guy is getting the most effective seizure control with the least amount of side effects. Upping dosages/and or changing meds is a usually a gradual process.
Hang in there. It must be so hard for your son to understand what is going on with him as he is so young. My son was very angry at first but seems to be taking it in stride at the moment. As parents we want to fix it for them immediately. Unfortunately E is a disease that requires a lot of patience. I be praying for you and your little boy.
About school and learning. I think everyone is different. Epilepsy and meds have effected my son's learning but we are all taking it one day at a time. It is important that when the time comes that you find a sympathetic teachers.
Take Care,
Julie
My 9 year-old son is fairly recently diagnosed too. He has generalized seizures also but at this point they are only petit mal (absence) He's on 750 mg of depakote. It was recently increased from 500 mg. He's still having seizures daily just not as many. He will most probably need another increase in meds but we don't go back to the nero until the third week in Dec. Anyway, I don't know much about the med they are giving your son but it could be that it may need to be upped or the med may need to be changed. It's pretty early in the game. I'm sure the docs want to make sure your little guy is getting the most effective seizure control with the least amount of side effects. Upping dosages/and or changing meds is a usually a gradual process.
Hang in there. It must be so hard for your son to understand what is going on with him as he is so young. My son was very angry at first but seems to be taking it in stride at the moment. As parents we want to fix it for them immediately. Unfortunately E is a disease that requires a lot of patience. I be praying for you and your little boy.
About school and learning. I think everyone is different. Epilepsy and meds have effected my son's learning but we are all taking it one day at a time. It is important that when the time comes that you find a sympathetic teachers.
Take Care,
Julie
kayakmom
11-08-2004, 09:43 PM
I know it is so scary to start down this road. Read all that you can find on seizures to educate yourself. I know that Dr John Freeman has a great book called Parents Guide to Childhood epilepsy that is helpful. I htink the Red edition is the newest. I have the blue one and it is good.
It takes 4-6 weeks to get adjusted to meds. If he is still having so many auras it is wise to call the neuro.
Some meds have more impact on learning than others do and it seems everyone is different with these meds. It is important to work with your neuro and if you see the side effects are too bad, ask if there is another to try.
It is a real balancing act to find the right med, right dose, the right timing and to find the least side effects and still control seizures..
Hang in there!
It takes 4-6 weeks to get adjusted to meds. If he is still having so many auras it is wise to call the neuro.
Some meds have more impact on learning than others do and it seems everyone is different with these meds. It is important to work with your neuro and if you see the side effects are too bad, ask if there is another to try.
It is a real balancing act to find the right med, right dose, the right timing and to find the least side effects and still control seizures..
Hang in there!
yolo
11-09-2004, 02:08 AM
We are praying for you and your son. Welcome to the board. We are here to help. Keep us posted on the comings and going with James. I think the first step, you have already taken search out other in the same boat there is strengh in numbers. Your not alone.
Live well
Yolo
Live well
Yolo
kayakmom
11-09-2004, 09:49 AM
The smelling, hearing and fear sensations can all be simple partial seizures. It is possible, sometimes for the EEG to be normal and there still be seizures. It does take time for the meds to take effect sometimes and also to get up to the right dose...
Hang in there....
Hang in there....