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Original poster

the doctor has told me that it is now time to think about decreasing

29 replies

2shoes · 16/09/2010 16:49

dd's epilepsy meds..... arggggghhhhh
she also said that as it has been to years since a seizure we could wean her off them...

I have decide to decrease after Christmas(Christmas was always a trigger)

thoughts please

(dd is 15 and has CP)

OP posts:

HelensMelons · 16/09/2010 16:53

thoughts are that this sounds like a scary thing to do, however if you know that christmas is a trigger then sensible to leave it until the new year. what does dd think?

Original poster

2shoes · 16/09/2010 17:00

havn't mentioned it yet, she used to get so scared of having a fit, it might make it worse

OP posts:

sarah293 · 16/09/2010 17:05

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Pixel · 16/09/2010 17:06

My sister outgrew her epilepsy in her teens so hopefully your dd has done the same.

sarah293 · 16/09/2010 17:09

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Original poster

2shoes · 16/09/2010 17:09

I hope so. I would like to take her off them , but I admit I am scared, at least in january I will have the support of the school and Nurses.

OP posts:

HelensMelons · 16/09/2010 17:12

ok, so it could heighten her anxiety then about having a fit. However, would it help her knowing that it would be left until after christmas when she is less stressed and if you decide this together, then you can monitor how she is feeling together, day to day, note any changes (keep a diary maybe) and ask the gp to give you both assistance because of the anxiety it will create for both of you?

StarlightMcKenzie · 16/09/2010 17:46

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Original poster

2shoes · 16/09/2010 18:39

i presume it would be something like 5mg a fortnight, that is how we did the increase, so 220 divided by that,.
when we have decided and I have talked to the doctor(not our gp, but her proper one) I will ask for a meeting so DD can be there and a nurse and we can talk about it with dd.

OP posts:

anonandlikeit · 16/09/2010 18:45

Have you been increassg as she has grown or ahs she been on a the same dose for a while anyway?

Original poster

2shoes · 16/09/2010 18:48

no we haven't increased for over a year and that was by 5mg.
she has been on pretty much the same dose for about 2 and half years

OP posts:

anonandlikeit · 16/09/2010 18:51

Thats a good sign then? Sounds sensible to wait until after Xmas & then slowly does it!

StarlightMcKenzie · 16/09/2010 19:11

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Lougle · 16/09/2010 20:21

So you would wean over 18 months? That doesn't sound too bad. I suppose you would stop weaning at any sign of seizure return, wouldn't you?

sneezecake · 16/09/2010 21:09

I know how you feel we had to wean DS (CP from birth injry) phenobarb, when he was a baby he didn't have and seizures for 6 months then started with petit mals, for 5 months, but was not medicated for them, and he eventually out grew then touch wood and crssing fingers, its still early days and has only been a year fit free, but we watch him like a hawk and worrry ourselves sick over it.
But take comefort in the fact that she hasn't needed her meds upping in 2 years growth spurts are nutorious for setting some off and she must have had a few of thoes.

and you know a dose that does keep them under control. It's just shit if they do happen you put trust in professionals, for them to let you down.

sneezecake · 16/09/2010 21:10

sorry hope that makes sense I'm a bit tired from not sleeping and have got wired attache to my chest which is making me red and itchy

Original poster

2shoes · 16/09/2010 22:15

omg 18 months!!!
I didn't do the maths,
that would be so hard if they insist on moving her, at he school(will be the same for 16 plus) I have doctors and nurses on site, othe college has one part time nurse(who I can't stand)

OP posts:

FioFio · 16/09/2010 22:17

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Original poster

2shoes · 16/09/2010 22:47

lamotrogine.
she only suggested it as after 2 years fit free they have to suggest it.

i do wonder if dd has grown out of it, but then wonder if it is wishful thinking......

Fio, do they think she will get that if she stays on those meds?

one of the things the doc did warn is that if we wean her of lamotrogine, which she has been fine with, and she has fits, then lamotrogine might not work if we start again.....

OP posts:

Lauree · 16/09/2010 22:58

Scary stuff; but surely it would be great to get off the meds or even cut them down a bit?

My DS only ever had a three big tonics - his fits are now fully controlled with Keppra but he had frequent tiny jerks and absences also now under control.
I hate the effects of the drugs so I try to keep his dose as low as possible; if he hasn't had a fit or jerk for ages, I'll think about edging his meds down a touch and then see what happens for a couple of months. If he starts his twitches again, we'd edge it up again, and try again in 6 months. If he's OK, down a tiny bit more and see what happens for a month or two. I've discussed this approach with his consultant, and we do it when I feel he is ready, not to any perscribed plan, because I know him better than the docs do, and I can monitor the effects every day. Obviously you can't extrapolate from our case for other children, but this is how I approach things; slowly slowly...

I suppose my point is, if you take it slow, you'll see if the seizures are still there, and you can stop reducing the dose, or put it back up a bit. IMO it's great news that the doc thinks you should try reducing the medication, and you're tuned in to the stress points like christmas, so good luck with it when you're ready.

FioFio · 17/09/2010 08:07

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OnceWasMummyPig · 17/09/2010 12:20

ds2 has been weaned of Epilim and also lamotrigine and has had no seizures as yet. The lamotrigine stopped v recently (within last fortnight) so we're still keeping an eye on him but with fingers crossed.

Ds2 didn't like taking the tablets and I think he's forgotten the seizures so it was easier to do without him worrying about them coming back. Also I was very keen to have him medication free due to the side-effects.

I can understand it will be harder for you with your dd, especially if you are worried you will have to try a different AED if the seizures return. However I think the fact that you have been on the same dose for 2 years is very encouraging as surely this will mean you have already been lowering the dose per kg bodyweight without thinking about it.

OnceWasMummyPig · 17/09/2010 12:23

Also, the weaning off might not take as long as the ramping up. I'm sure I read somewhere (but can't find the article now) that it makes no difference to the outcome whether a child is weaned off AEDs over 3 months (usual) or 6 weeks! You could possibly mention to the neuro your concerns about timing and she could work out a schedule that completes the weaning (if all goes well) before your dd has to change school.

Original poster

2shoes · 17/09/2010 12:24

thanks
I don't plan for dd to change school, might even see if this could be one of the things I can use.

OP posts:

Lougle · 17/09/2010 18:27

DD1 is currently weaning off lamotrigine. She has tremors in her extremities, which have extended to her trunk and head recently. The Paed didn't like it, and as the only change is the lamotrigine (which was started because of the tremors), he wants to wean and stop to see if they go, and get another EEG.

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