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Epilim and drowsiness

(6 Posts)
noodlingabout Tue 22-Mar-16 10:33:14

Hello

DD(10) has been on Epilim for a couple of months and had an increase around four weeks ago. She's been tired and drowsy. I took her to the GP and he did urine test (clear) but it was only on our way home that she told me she feels tired every day not just on the days when she feels too tired to go to school.

I'm wondering if it could be the epilim? If so, how long this could last or if it's something which could mean she needs to try another drug? She's also very hungry but I think this is a side-effect which doesn't go away?

All advice gratefully received!

Maegeri Tue 22-Mar-16 10:47:59

My DS(11) has taken Epilim for the last two years and hasn't had any side effects although I have heard that it can increase appetite. He has a large appetite anyway so I haven't noticed any difference and he is very active so it hasn't been a problem. He hasn't had any noticeable drowsiness but can be a bit forgetful. Did the consultant give you any contact details for a specialist nurse? Ours did and we give her a call when ever we have any worries and she is brilliant. If you don't have a number for one I would suggest trying to contact the consultants secretary and ask for a number for a specialist nurse who might be able to help. You cant always get hold of them straight away but they always get back to me when I leave a message.

noodlingabout Tue 22-Mar-16 11:13:18

Thanks for posting Maegeri, it's good to hear the side-effects are inevitable and I'm pleased your son is doing well on it.

Sadly our borough do not fund a specialist nurse. We keep being told one is due to start but so far, no sign and no start-date so we're on our own, pretty much. The consultant is good and takes us seriously but we're one of a large number of patients, I'm sure. It's hard to judge when it is appropriate to go to her and when to our GP. I really wish we had a specialist nurse. It would make all the difference. There is so much stress and worry around the 'unknowns' it's unbelievable.

I have noticed DD being a bit forgetful too and I do worry about her learning. And her future. And her education. And her social life . . . the list is endless! I think I should give up work and worry full-time!

Maegeri Tue 22-Mar-16 12:41:01

Sorry to hear that Noodling. It must be difficult to have no one to go to. The only other thing I can think of is one of the helplines like Epilepsy support? I expect you will get the usual 'everyones different' reply I'm afraid.

I know what you mean about the worry, it just snowballs when you start to think about it. Its also hard to know what is the epilepsy, what is the drugs and what is just normal growing up. My DS has just had a trial of coming off the drugs to see what is going on and had a seizure last week so its still there lurking. Hope your DD starts to feel better as she gets used to the epilim and that it controls her epiliepsy well.

noodlingabout Tue 22-Mar-16 13:49:04

Thank goodness for mumsnet. At least we can talk to each other.

You are right, the epilepsy helplines are good for some things but when it comes to trying to figure out what is going on with a particular child at a particular time, it's not so great. We really do need a specialist nurse.

We tried to go back to GP for blood test but they've told us to get in touch with the consultant - which will mean weeks of waiting if she agrees to see us. As you say, we don't know it it's drug, epilepsy or general health/age related. I would like her liver function checked out as a side-effect of epilim could be liver problems which make you tired. I'm also concerned it could be her mental health - maybe it's making her depressed.

All we can do is email the consultant and hope for the best.

I am sorry to hear your DS had a seizure when you tried coming off the drugs. That must have been disappointing, on top of the usual distress of having seizure. It's such a lot to cope with at their age (and ours!) I hope he's ok and stable now.

Maegeri Tue 22-Mar-16 14:19:19

He is good now thanks. I have to remind myself that we are lucky we have found medication that works. He seems to handle it all much better than me! I hope you get some advice from your consultant soon

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