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Help - 5 year old ds with CP and controlled epilepsy having strange turns

10 replies

baseW · 21/07/2009 20:58

My 5 year old son has CP resulting in him having problems with general gross and fine motor skills. He has difficulties with balance and coordination and OT, Physio etc are all involved.
He has epilepsy and has been seizure free for 2 years after taking Lamictal 40mg twice a day. As a result we had started weaning him off his meds but unfortunately he had another seizure so we are back on them again.
Lately however he has been taking weird turns - again tonight hence the message before i phone docs tomorrow!!! It is like he looses all strength - its difficult to describe. He is fully awake and responsive but if it was'nt for me holding him and supporting him he would fall over!! It only lasts for a couple of minutes and then he is fine. There are no other symptoms and no warning.
He also has a simple colloid cyst that appeared on his MRI brain scan but docs are unable to confirm if this relates to anything!!
Anyone got any ideas / thoughts / experience
Much appreciated thank you.
baseW

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mummypig · 21/07/2009 21:05

Is it more than just tiredness? I know ds2 (also 5yo) gets very tired whenever his lamotrigine is increased, and can go 'floppy' on us. It doesn't seem like a seizure as he is also completely awake but just exhausted.

He's currently having his dose increased very gradually and the last increase was on Sunday evening. We went out for a meal in Pizza Express after school which was a mistake really, as he was just too tired to deal with it and was flopping around everywhere. At one point he lay down on the restaurant floor [wry smile] but at least we were in the process of paying our bill by that time.

Anyway that's just a thought but I don't have a huge amount of experience or insight, maybe someone else will be able to contribute soon.

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baseW · 21/07/2009 21:11

Thanks for that - his meds have been steady for the past couple of months. Floppy is a great description the irony is that he had a floppy turn in the hospital reception after his usual epliepsy check!!
I am unable to think of a common trigger, we are always very cautious incase he gets over tired as this obviously does not help with his epilepsy and his general balance etc.
Thank you
baseW

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trace2 · 21/07/2009 21:23

could be a drop attack to!!

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baseW · 21/07/2009 21:48

Hi trace2 - have just had a google frenzy and that could very well be the case!!
Thank you for that - will be straight on the phone to epilepsy nurse tomorrow.
Many thanks
baseW

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trace2 · 22/07/2009 09:37

baseW please keep us informed dd as drop attacks and its like you say just falls weather standing sitting what ever and can be very quick like a spilt second, or some times longer.

hope your ds is ok?

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sarah293 · 22/07/2009 10:07

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baseW · 22/07/2009 11:22

Phoned hospital and suprise both consultants on leave!!
Anyway nurse said that she would discuss with another consultant and get back asap!
Thanks everyone - this is the first time that i have posted anything and it has been v helpful already!!
baseW

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baseW · 24/07/2009 00:21

Hi,
well got phone call today and they decided not to do anything!! just watch and wait basically!! Not sure if best course of action but that seems to be the plan as both consultants off on leave.
Have started to over analyse lots of situations were i am beginning to think that this is perhaps what has happened. Nurse asked to keep record if any other symptoms like eye flickering, throat noises etc happen during episode - does anyone else have any experience of this?
Thanks again
baseW

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mummypig · 24/07/2009 00:38

Oh so sorry to hear they haven't been much help. Definitely keep a record of how many times it happens, whether or not you notice any other symptoms like the eye flickering. What kind of seizures did he used to have? Ds2's tonic clonics included all the eye flickering and noises but his myoclonics were so quick, although he usually made an 'uh' kind of noise with them.

Hope the consultants come back soon and get back to you.

Have you tried the NSE (National Society for Epilepsy) forums as well? I have found everyone there very helpful.

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baseW · 24/07/2009 22:21

Hi mummypig
ds usually has tonic clonics in the morning only.
Have had a look at the forum and yes it looks very helpful - thank you.
Poor ds though - feel like i am watching and following him like a hawk!!
Thanks again