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Best drug for absence seizures?

12 replies

ZoesMum1 · 26/06/2008 15:26

Any parents of children with absence seizures, ( also known as pitit-mal epilepsy), please let me know if you have found a drug that works well. (Probably most helpful if this is the only type of seizure the children are having).

My daughter is on ethosuxamide which is stopping the longer seizures. She is really struggling to separte from us at nursery etc which we think is because of frequent very short absences which frighten her.

OP posts:
happypingu · 27/06/2008 11:37

Hi, dont know if this helps but as someone with more than one type of epilepsy and also passed on to two of my children, after some kinds of seizures it can be quite scary especially if you have any kind of black out or absence. I myself sometimes panic and need to be calmed down and told what has happened and on occasions dont always recognise familiar people (this is usually with a grand mal fit though and losing consciousness), so when my daughter has had them I have had to calmly re-assure her that everything is ok and tell her where she is etc. Both my children were put on Epilim (sodium valporate)but not being a medical person I cant say if that would be good for helping with the short absences.

ZoesMum1 · 28/06/2008 08:02

Thanks. It's really helpful and it makes complete sesne! It's really great to get the adult perspective because you can explain what it feels like! Unlucky for both your children to be affected.

Z's absences are also generalised type seizures i.e. she loses consciousness. We were told she wouldn't be disorientated by them but she does seem to get scared & confused. Now Z is playing games where we close our eyes and she has moved to a different place when we open our eyes. I suspect that this is what is happening to her where people seem to magically move without her seeing them move. It could be quite disturbing?

We tried sodium valproate first but it didn't make much difference at all.

Do any other parents of children with absences got any experience/advice to share?

OP posts:
ZoesMum1 · 28/06/2008 08:02

Thanks. It's really helpful and it makes complete sesne! It's really great to get the adult perspective because you can explain what it feels like! Unlucky for both your children to be affected.

Z's absences are also generalised type seizures i.e. she loses consciousness. We were told she wouldn't be disorientated by them but she does seem to get scared & confused. Now Z is playing games where we close our eyes and she has moved to a different place when we open our eyes. I suspect that this is what is happening to her where people seem to magically move without her seeing them move. It could be quite disturbing?

We tried sodium valproate first but it didn't make much difference at all.

Do any other parents of children with absences got any experience/advice to share?

OP posts:
ZoesMum1 · 28/06/2008 08:02

Thanks. It's really helpful and it makes complete sesne! It's really great to get the adult perspective because you can explain what it feels like! Unlucky for both your children to be affected.

Z's absences are also generalised type seizures i.e. she loses consciousness. We were told she wouldn't be disorientated by them but she does seem to get scared & confused. Now Z is playing games where we close our eyes and she has moved to a different place when we open our eyes. I suspect that this is what is happening to her where people seem to magically move without her seeing them move. It could be quite disturbing?

We tried sodium valproate first but it didn't make much difference at all.

Do any other parents of children with absences got any experience/advice to share?

OP posts:
ipodtherforipoor · 28/06/2008 08:10

My XP has absence seizures - epilim works quite well for him.

He too gets quite disorientated,especially if they happened in the middle of conversation - we reguklarly argued about if I had told him something or not, and usually I had but he had beenin an abscence!

happypingu · 30/06/2008 11:54

Hi, it can affect memories as well - I often can't remember the last thing I was doing and so sometimes wonder why I am in one place when I remember being somewhere completely different

Zoesmum1 I think you are right, maybe she is showing you in her own way how things appear to her and how it can seem a bit strange. My eldest didn't suffer with as many as my youngest thankfully but when my youngest had them we tried to make sure we didnt move her from where she was too much unless completely necessary and stayed with her, then just kept talking to her and re-assuring her everything was ok. Only problem is after a big seizure a sleep was quite often needed and it is was after that she couldnt always remember some things and I am the same.

ZoesMum1 · 03/07/2008 23:54

Thanks happypingu and ipodtheforipoor. I'm just beginning to realise how much effect seizures have on memory . It does really help to hear from other people with some experience. It makes it easier to understand what Z is going through while she is still too small to really be able to explain.

OP posts:
mumsu · 17/07/2008 20:58

My daughter is 16 months old and having 'vacant' episodes that I am unable to rouse her from - everything ive read about abscence seizures says average age of onset is 3-12 years - has anyone else had a diagnosis earlier than this? I am really worried

happypingu · 18/07/2008 09:11

Sorry I cant help you with that one, as far as I can remember I had my first episode when I was 14 I think, and my daughters were both within the 3-12 age range. I can understand how worried you must be

mumsu · 20/07/2008 19:00

Thanks happypingu!! everything I have read about absence seizures seems to fit in with what my daughters doing, but shes so young, I just hope its not a sign of something even worse. I am seeing the doctor on wednesday and then I guess I will have to see how long it takes for a paed referral, then tests etc etc, im guessing it all probably takes ages!!!!

PheasantPlucker · 23/07/2008 17:02

DD1 takes epilim, but the seizures are not totally controlled.She has breakthrough seizures if tired/ill/over excited.

My tried Tegretol and another one (just cannot remember name now) without success. One was so bad it had a terribel reaction and dd ended up hospitalised.

PheasantPlucker · 23/07/2008 17:02

Sorry, 'terrible'

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