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Please can anyone help me with this or give your experiences? Epilepsy and medication-carbamazapine

(41 Posts)
used2bthin Wed 21-Sep-11 21:06:31

After ringing to say could we think about medicating DD and it is our decision, the neurology registrar called back today to check if I had decided yet. I said that I still feel unprepared for this decision as didn't know enough about it and asked them what the neurologist feels. He said he thinks medication is apprpriate now that dds seizures appear to be more frequent.

I really want to contact epilepsy action for a chat about this as I feel unsure due to all the side effects, esp as dd has a lot of speech and language and development to catch up on and I understand that the drugs could make her sleepy and interfere with this. Also she is steroid dependant and is at risk of becoming very ill indeed if she has sickness etc from them initially which seems to be fairly common.

otoh if they feel its safer to do this then she needs to go on it. Or maybe they have to say that is what they think to cover themselves? Any advice appreciated, I will try and ring epilepsy action tomorrow but it is hard as I will be at work then at a hospital appointment with dd and thier lines close at 4.

GRW Wed 21-Sep-11 22:10:20

Can you ask to speak directly to the consultant neurologist as you are finding it hard to make a decision? Uncontrolled seizures may in themselves lead to developmental delay, so giving medication is often appropriate, and not all side effects you read aboout will happen to an individual child.
I would advise you to follow the advice of the neurologist who knows about your child's condition.

used2bthin Wed 21-Sep-11 22:16:50

Thanks, I asked to see him but they said they don't normally give appointments just to discuss meds. We have one but not till december.

Tomorrow we are seeing her consultant for her other condition and she is always helpful soI am going to try and make my case to her that we need more help with this.

She had two seizures three weeks apart but we don't know if she is having them some nights too. It feels mad because the seizures themselves, whilst scary, didn't last long and were so odd that after I was left thinking did that happen?Did I imagine that was weird? But really I think I am in denial.

Tota1Xaos Wed 21-Sep-11 22:24:34

well I've no relevant experience but seems to me v sensible to talk things through with DD's other specialist, both in terms of you have rapport/confidence, and to make a contingency plan for any side effects. I suppose that if the meds did cause intolerable side effects she could be weaned off, so it's not an irrevocable decision?

used2bthin Wed 21-Sep-11 22:35:30

Thanks yes I feel I can trust her and even if she doesn't know the answer straight away I think she would tak eon board what I say and find out or speak to the neurologist for me maybe.

Her school are working so hard on her learning difficulties and making progress, the thought of her feeling tired and sick and not learning is too awful but I suppose she may not be badly affected.

The doctor who called said they like to try meds for two years minimum but they could switch to different ones if she didn't tolerate them.

The side effects affecting blood are very worrying-she would be more susceptable to leukimia I think? Anyone know if thats true?

Its so worrying all of this, I have't even allowed myself to go onto the working when your child has developmental delay etc thread as am already sooo tempted to leave work, I can't see how I can manage all of this and carry on as I am. But maybe this is late night me talking!

Tota1Xaos Wed 21-Sep-11 22:40:57

have had a quick google, reputable research seems to suggest there isn't a link

www.ncbi.nlm.nih.gov/pmc/articles/PMC2077448/

but obviously you need a medic to give you a proper informed answer on this one.

used2bthin Wed 21-Sep-11 22:45:26

Ah thanks, that does seem reassuring. I am still so undecided although don't think I can take the risk if he epilepsy could endanger her if left untreated which presumably the neurologist feels it could.

What a lot this year has brought up for dd!

used2bthin Wed 21-Sep-11 22:46:42

Ps they did say they would test her blood regularly if she goes on meds and something to do with taht sort of thing although I can't exactly remember what he said. I will have to speak to them again I think.

bigbluebus Thu 22-Sep-11 08:35:59

Is it epilepsy medication in general that you are concerned about or just this particular drug? Alll anti-convulsants can make you drowsy to a certain extent although it depends on the dose. Seizures, however, can cause problems if left untreated, so I know it is a tough decision which way to go. My DD was put on Carbamazepine to try and control her seizures but developed an allergy to it (came out in a rash, high temp & more seizures - which we were told was a virus - but was later proven to be drug reaction)It is the only thing she has ever been allergic to! However this drug has been widely used for many years (was 13 yrs ago DD was on it) so it must be effective and side effects rare or they wouldn't still be using it.
There are many alternatives, so if it is just this particular drug you are worried about, ask your consultant if there is an alternative.

ferryman Thu 22-Sep-11 13:51:43

we have a 5 yr old dd who was diagnosed with epilepsy over 2 yrs ago. she has been on 2 different anti convulsant drugs (lamictal and epilim) with no problems whatsoever. unfortunately she still isnt fully controlled. still having seizures about every 2 weeks and she always needs a sedative to stop her seizure. i would definately consider medication if it means the risk of having a seizure is much less. good luck with everything

trace2 Thu 22-Sep-11 16:30:52

hi i replied to the other thread dd 4 as been this med over 9 months i can only give our experience with it! before the med she used to come home from nursery and be very quiet , not move or eat much and could not smell things plus her seizures anyway just after 4 weeks of the meds she more alert, comes home and wants to play, can now smell things her speech as come on she now remembers things from ages ago never mentioned before smile she still is having seizures when over tired and when ill but most have stopped, and it dint make her tired or sleepy at all. we are seeing our nuero tomorrow so will update you then.

used2bthin Thu 22-Sep-11 19:39:31

Thanks for the replies. We have seen our other consultant today and she seemed to agree that meds were probably a good idea although I asked what the risks are for seizures and she did say that since dd's are quite short and she is too young to ever be unattended in a dangerous situation such as crossing aroad, swimming etc that it may be quite a low risk but that if they were increasing in frequency we should consider meds. I am still unsure as to whether the seizures do her any harm to be honest? Anyone any idea of whether short focal ones are dangerous/damaging? My feeling I THINK is to wait till half term and if she has had more by then to start meds. I am just aware that she is doing so well at settling at school and dont want to rock the boat unless I really have to and that way if she feels a bit off colour to begin with she will be at home anyway and not missing school.

TReally reassuring to hear the lack of side effects for some children-bigbluebus that sounds a bit scary for you! Yes I think it is any epilepsy drugs I am worried about as she is on so much already and anything mind altering seems terrifying I am worried it will change her or make her behaviour worse as things have been very hard lately with her.

ferryman can I ask is your DD having full seizures (sorry dont know the term-tonic clonic?)

DDs seizures are so undramatic that although scary at the time its hard to know what to do after. Her dad and my parents feel she isn't bad enough to warrant the worry of the drug treatement but then they haven't seen the seizures or if they have they don't realise!

unfitmother Thu 22-Sep-11 19:52:36

I've been on carbemazepine for years, no nausea or tiredness here.

unfitmother Thu 22-Sep-11 20:01:30

...or fits!

used2bthin Thu 22-Sep-11 22:15:57

That is good to know. Do you remember if you had any effects when you first started them?

trace2 Fri 23-Sep-11 14:52:58

well i said i would get back to you after seeing nuero , he as upped dd meds hoping to stop them and cos she as tolerated it well , so fingers crossed it helps hersmile he still wont say she epileptic cos she only 4 but says she probable is confused

unfitmother Fri 23-Sep-11 20:17:59

No, I had no side effects whatsoever.
Remember, they do have to mention the worst case scenario.

doigthebountyeater Sat 24-Sep-11 10:27:34

Different epilepsy drugs have different effects on each person. There are no givens when you start a drug. My son was on epilim which made him nauseus. It did stop his seizures completely. Now he is on keppra which is great.

mariamagdalena Sat 24-Sep-11 13:54:19

You're not having to decide to do anything other than whether to give the meds a try or not. It feels scary because you haven't don't it before. I'm sure they'll be much less trouble than the steroids , but if you notice they dont suit her then you'll dump them. Or change the dose or switch drugs.

used2bthin Sat 24-Sep-11 19:36:11

Thanks all. Trace2 sorry to hear the dose has been upped but hopefully your dd will continue to tolerate them well. I have somehow only just seen that your dd's speech has improved! Thats great, so you think this is due to less seizures?

unfit mother and doigthebountyhunter (good show!) yes that is true and I bet if I read DD's steroid side effects they would be terrifying and even her movicol ones for constipation probably aren't great.

marymagdelena yes true, I think because with the steroids I jst knew she has to have them or she won't survive i just never thought about them-she just needs them. Whereas this feels like if I decide she should have them then they delay her development or make her ill then it was my fault. But then I know it could be the other way if I choose not to try them and I think if she has another obvious one we just have to start them and in the mean time I am trying hard not to tire her out too much.

doigthebountyeater Sat 24-Sep-11 20:52:49

I didn't get a chance to type this earlier but there are some good reasons to take meds:
1) She may be delayed developmentally if she is continually recovering from seizures (if they are frequent)
2) There is a very very small risk of dying from a seizure and some risk of injury
3) If you become seizure free on meds for two years then they withdraw them gradually. 50% of children go on to become free of epilepsy

These are the reasons my son is on keppra. He is having a good life and the keppra is working really well for him. No side effects and he has been seizure free for a year now. The epilim was shitty though don't forget that it is other people's dream med. The only way to find out is to try each one really. I felt exactly the way you do about putting my child on drugs. I googled it and got all the worst side effects and went really hysterical. Now I am glad he is safe. He had nocturnal seizures and now I know there is much less risk of him dying in his sleep so I am very glad indeed.

Join the Epilepsy Action forum to get some good advice from the nice people on there. Good luck. Epilepsy is a terrible thing to see your child experience and I still feel very upset about my son having it but it does get easier to live with.

r3dh3d Sat 24-Sep-11 23:21:36

OK. Fwiw, DD1 has stonking Epilepsy and has tried most of the meds out there, so I am possibly coming at this from a bit of a gung-ho angle.

Your issue is that the brain is designed to "learn" things that it practices. Eg throwing a ball, French verbs, times tables - practice reinforces the neural pathways. Unfortunately, there seems to be something similar with seizures. Although a delay between diagnosis and treatment isn't going to do her any harm, longer-term, the more seizures she has the better her brain gets at having seizures and the worse and more frequent they will become. So if you're going to put it off, put it off for a reason, eg while you research the pros and cons of one med over another. You can't put it off indefinitely.

Re: side-effects - well, most E meds aren't anywhere near as bad as they used to be. The ones with the really noticeable cognitive effects are only used in the more severe cases these days, and for those cases the cognitive side-effect of the seizures is worse than the side-effect of the meds. Also, the worrying side-effects they describe in the leaflets are often not the most likely ones: they are just the ones the manufacturer needs to tell you about to cover their arse. In fact most of the scary ones hardly ever happen to anyone, you go onto an Epilepsy forum and the side-effects they are talking about don't crop up on the packs and are generally harmless and transient: I work on the basis that most last about 2 weeks and, as has been mentioned before, if they go on for longer than that you can always change med. It can take a few weeks as most of these meds need to be withdrawn carefully, but it's not hard to do. So if you look at it from that point of view, what have you got to lose?

Also - OK she may be having mild/focal seizures but do you know for sure that she's not having any subclinical activity? or that the seizures aren't affecting her sleep, which is essential for learning? It's very possible that medication may improve her cognitive performance by clearing up that "interference". You just don't know till you have tried it.

used2bthin Sat 24-Sep-11 23:49:37

Thank you, really really good info here and I am feeling better already about the prospect of meds.

When we first had the eeg result indicating epilepsy I googled and saw that there were types where children's learning improved with meds and got all excited about it but the neurologist seemed to be saying that the type dd has isn't like that or at least he doesnt think so. He at that point said lets wait and see but dd had another seizure within weeks of that appointment so I can now see what they mean by worrying about her having more frequent seizures.

I am worried I am losing it a bit over this as am essentially the only person who has actually seen these episodes and ikeep worrying that I am wrong or remembering things differently. Denial I tnink!

used2bthin Sat 24-Sep-11 23:53:56

Meant after those posts I can see why its worrying and thats exactly what I meant-I need to know what risk I am taking if I don't choose medication. Because its benign rolandic they often don't medicate but I had been uneasy with the idea that stuff could be going on at night I was unaware of and also been worrying over sudden death from epilepsy.

Oh one more question/thought-since seizures can be triggered by tiredness etc then is it possible she only had the two recent ones due to being really really tired? Or do they tend to increase in frequency anyway?

r3dh3d Sun 25-Sep-11 08:52:13

bit of both, I guess.

part of it is the getting-better-at-seizures angle, though I imagine that will be milder with this form of epilepsy. Part just her age - very common I think for the milder epilepsies to emerged around 4 or 5 because of brain development: better wiring, hormonal changes. means the brain gets better at cognitive tasks but the catch-22 is it gets better at seizures too. but yew, also tiredness is a trigger, as is stress and illness (and alcohol but you can put off worrying about that one for a bit!) everyone - you, me, everybody - would have a seizure if our body was stressed enough, eg if you were really gravely ill in hospital. everyone has a natural seizure threshold which is lowered by things like being tired. if you have epilepsy your threshold is set a lot lower to start with so relatively minor things can push you over the edge. with dd1 its illness most often - every little cold and sniffe and even just fighting off a virus and winning, so we never really see she is ill, but afterwards you think "oh yeah, I had a sore throat a couple of days ago"...

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