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

[used2bthin]

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.

used2bthin sorry only getting back to u now but was working over weekend. yes dd seizures are tonic/clonic type and they all occur around bed time. mainly early morning but she has had 2 just after going to bed. she has a learning disability and cp but i can 100% say that being on anti convulsants hasnt affected her learning ability. in fact she is improving all the time. we got a seizure monitor for her bed which alarms if it detects unusual movements & increases in heart rate which has given us peace of mind at night. also have a video monitor in her room. hope all settles down for your dd and heres to no more seizures

Thanks ferryman. I am feeling like I am coming around more and more to dd needing the meds. I am the only one unfortunately so her dad and others in the family may take more convincing but I keep worrying about SUDEP and am alert for them at night in case it gets worse.

I wonder whether the alarms would detect focal seizures too? That would be a way of knowing how often dd really has them.

Well, not very helpful reply I'm afraid but it depends on the seizure. Focal seizures is a very very broad term; DD1 has all sorts of focal seizures of various shapes and sizes, and some involve movements a monitor would pick up and a handful involve apnoea a different monitor would pick up and I think most at the moment involve change of heartrate. But. Her bed is huge (long story, but it has to be) and the monitors cover very little of the surface and they are famously a bit hit-and-miss anyway. So they don't work for us, tbh our ancient baby monitor is the best way, and when we are really worried about her (with her history of apnoea in seizures) we either sleep on a pull-out bed in her room or in her bed with her.

Consultants can be quite suspicious of monitors, because they tend to give false positives and I can imagine that if you get a family who is in and out of their child's room all night because the alarm keeps going off, and constantly calling you for tests and reassurance because they think their child is constantly at risk where it's actually the monitor not the child - yes, I can see you'd go off them quite quickly! But that's throwing the baby out with the bath water imo. If you can be responsible enough to realise the monitor doesn't work for everyone and you maybe have to try it and then assess honestly if it's really helping you and give it back if it isn't, then it's worth trying one. When they do work, they're great.

Tbh, the only way to know for sure what she has, and how often, is telemetry. Which is an eeg which goes on for days. It's expensive and there are big waiting lists and generally they give it to kids for a specific reason - in DD1's case to see if they can pinpoint which bit(s) of the brain to remove surgically because the meds don't work. So not really appropriate for your DD. But you'd get a good feel for it by doing a sleep (or sleep-deprived) eeg to see what happens in the brain in sleep and how far you can see that going on by watching her - and then taking shifts staying up at night with her for a few days & keeping a diary. Sleep eegs are a bit harder to get than the vanilla ones, but because so many kids have more seizures in and around sleep, they're very informative.

DS had a sleep deprived eeg in THE DAY even though he never had seizures in his daytime sleep (only at night and hundreds) so it came back clear, as did all of his tests/scans. Good in a way as we then knew he had nothing really badly wrong with him but it took us 4 years to get a diagnosis of epilepsy, which was a total nightmare for us.

Thaks for the replies and sorry to keep going on about this. 'm finding it hard to deal with atm and tired with the growing issues but I know epilepsy wise she is very lucky as she will probably outgrow it if it is indeed benign rolandic.

She had a sleep deprived eeg which showed activity in the rolandic area of her brain but is also due to have an MRI next month to look for anything structural as she also has the learning difficulties and small head.

I have been keeping a log of her at night but tbh its hard to know what is normal as the twitching happens quite a lot, the only reason I knew the night time one she had recently was one was because she got up and called me then fell on the floor and one hand was twitching. The next one was quite different though so I see what you mean about focal seizures.

It can be hard to control from the sound of it.

Hope it is benign rolandic as then she will definitely grow out of it. I would still medicate anyway as I think it is better in the long run. Don't be afraid to bang on about it - Ds got diagnosed 2 years ago and there is not a single day that goes by that I don't talk/think about epilepsy.

thanks doigthebountyhunter it certainly seems to be what they think it is so fingers crossed. I got so involved with her genetic condition, volunteering for the support group, learning all about it etc and just feel like I have run out of steam a bit since! I think when someone has one thing you think they are immune from others sometimes!

I think dd probably will end up on medication tbh. Just been in her room as heard a bang and she was a bit twitchy in her sleep, legs kicking a bit and twtichy arms and mouth opening and shutting. Could be a dream or could be a seizure- I could obsess over this so much!

Hi used2bthin. Just came to point you in the direction of the Muir Maxwell trust who can provide you with a free alarm but it appears they don't offer them anymore!

Hope are happy whatever decision you decide to make - fingers crossed your DD will be one of the children controlled on the first drug they try.

Oh thank you. I may look into costs soon although am mostly in dd's room at night atm as dd suddenly v anxious about being alone.

Just had letter post appointment (which was before the latest episode). Letter explains that after dd's MRI they would start her on meds if it was normal and she still ad seizures. Also says the MRI is because despite the eeg indicating benign rolandic epilepsy, dd has a genetic condition, small head, learning difficulties and chromosome abnormality so it is important not to assume it is benign rolandic epilepsy. None of which has been explained to me properly and tbh has made me nervous. Only a wee and a bit to go till the MRI though. Wonder if I will ever get over seeing all the issues on paper like that, it always seems worse than saying or hearing it.

Well, they are never going to tell you all the things it might be because tbh you'd just spend all your time googling highly improbable worst-case scenarios and working yourself up over nothing. As DH would say, you can burn that bridge when you come to it. Ime there's a fairly predictable protocol to NHS testing, which is they test for the stuff that is cheap and easy to find. And they test for the stuff that is statistically probable. And they test for the stuff that is very nasty indeed, and needs to be identified early. And then they are done, until you talk to a new person who has slightly different views as to what is probable etc. It's a motley crew of disorders, and the fact that they are testing for x or y doesn't mean that your LO is likely to have x or y, it might just (for instance) mean that testing for x is on special offer this week.

Thanks yes that is true. As far as I was aware before they were testing to look for abnormality in the structure of the brain. Ah I guess I just have to see what happens. A mum I spoke to whose DS has GDD said that his MRI showed that his brain wasn't developed as it should be for his age. But that the neurologist then explained that this could be because he had GDD or could be the cause of the GDD! So she didn't find it that informative! But ruling things out is always good.

Have just seen this discussion. My dd has been on carbamazepine for 8 years now and there have been no side effects. Since she has been taking this medication there have been improvements in her concentration, speech development, handwriting and co-ordination as well as the fact that her seizures are under control.
I really would recommend trying out medication as even small seizures can affect a child's learning and development. Taking medication really isn't a big deal and the benefits far outweigh the risks of doing nothing.

Thank you that is really interesting. We have an MRI booked next week and so I am going to wait till the results and half term then will probably start her off. Really hopeful hearing how some children progress well on meds and that the epilepsy can hinder speech development-my dd has severe meory and word finding problems to the extent that she relies on stock phrases and hr speech is very unclear-it would be amazing if meds could help her (not getting hopes up just in case but it would be a best case scenario and probably worth a go.)

Can I ask about your DD's type and frequency of seizures before hand?

Hello. My dd had her first (noticeable) seizure when she was 3 years old. It was tonic-clonic and occurred at 4am while she was asleep in bed. They don't usually medicate after a first seizure but as it was so severe (and a family history of epilepsy) they did start medication straight away.
Seizures now very infrequent (less than one a year) and have really only happened when they tried to reduce her medication or did not increase it for few years.
Am not sure what type of epilepsy dd has but may be linked to being born prematurely.
Hope that helps

Hi, thanks for this. That sounds scary especially having it at night-DD's are mainly night time as far as I know and I worry about not realising and her having one. Glad the medication is working so well for you, epilepsy is a confusing condition so many different types, I had no idea until recently.