Epilepsy Research UK
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Daughter recentky diagnosed with epilepsy age 19

Hi all im new to all this and devastated for my daughter .my daughter started keppra on the 9th of december and has been to accident and emergency twice after having 4 seizures in a row this has happend twice now her dose has been upped but she seems to have jad more seizures since being on meds will this stabalise ? Also how do i go about her independence as she is getting very fed up of me watching her do i still go to work and leave her to do her everyday things i just dont know what to do and its making me very anxioys and ill .sorry for the long post any info would be appreciated

Thanks gemma x

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Sorry to read about all this. However you need to contact your daughters neurologists secretary and ask for an urgent review of her case.

Here’s wishing you all well.

Richard

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Thanks for your response richard i have been intouch with them just so frustrating and they are not very helpful at all

Gemma

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May I ask Gemma in what way that they are not helping you?

Kind regards

Richard

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The receptionist is just very rude and as all this is new to us our gp sayscwe should speak to neurology and neurology says our gp shoukd be handeling it shes been in a and e twice and ohr neurologist didnt know its like they dont communicate with each other .

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I'm sorry to hear about your daughter. It may be that Keppra simply does not agree with her she may be better on something different. Which why you need to get her case reviewed urgently by her consultant as it doesn't seem like she has a good quality of life at the moment. I myself was diagnosed at 16 and my daughter when she was was 14 but have been lucky our seizures are controlled by medication. I am on Keppra and she is on Lamotrigine. If you are not happy with the consultant your daughter has you could always try to get a 2nd opinion. But this may take longer and it sounds like she needs to see someone sooner rather than later. You could always raise this with patient services see if they could help.

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Hi thank you for your reply we have an appointment on agurday with her neurologist so hopefully get some answers they have mentioned lamotragine in the past how is your daughter on this and is there more side effevts than the keppra ?

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Hi my daughter is 15, our neurologist says Beth can do anything except swim alone. On further reading from epilepsy uk they advise I should be around when she is in the bath, she sings and I stay outside bathroom 😃. I panic when she goes out with her friends, she has an epilepsy bracelet and info leaflet in her phone case, her family and friends, school, youth club have all been instructed what to do in case of a seizure. She is on keppra and took a few months to settle down, 5 dose increases, she still has some focal seizures but less tonic clonic which the consultant says is good. Hope everything improves for u x

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Hi its scary im on edge all the time my daughter loves the bath ! But shes been told to get showers i just dobt want her in on her own or out lol but shes19 so i need to step back a bit as sbe is gettibg annoyed with me .

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Hi Gemma, so sorry to hear about your daughters situation, when I started on Keppra I felt unwell, dizzy and sick and like I was drugged just not with it, it took about 3 months for it to settle, but I would ask if there is an epilepsy nurse that your daughter could see, I find mine far more helpful than the consultant who I rarely get to see but my nurse will reply to e-mails and telephone me if I'm worried about something or if I feel different. I see her every 3 months or so, I know I cannot drink alcohol with my medication, I know some people do but when I've even just had one small glass of wine I normally the following day have some sort of seizure or effect from this and tiredness and stress or if I have a virus could all result in a seizure with myself, everyone is different and it does help to talk things through. I also attend an epilepsy coffee and chat once a month and meet up with others in the same situation, which you could also go along too, this is run by Epilepsy Action, maybe worth checking if they have one in your area, but hearing about other people's experiences with different medications is helpful and getting support from them made me feel like I wasn't alone. I wish you the best of luck, and keep persisiting to see the consultant or go back to your GP and see what other options are open to you.

bev

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Hi thanks for your response we havnt got an epikepsy nurse at our gp but maybe they coukd refer her to one i will enquire about that i just didnt exoect her having more seizures on the meds than she did without it so it must not be working she woukd only have one before and oast few times shes having 4 in a row i can just aboyt handle one but 4 just takes it out of me and my daughter bless her .

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Hi Gemma, Iam exactly the same as you my son had his first seizures in October and I watched him like a hawk, it’s taken till now for me to ease off but I still phone or text him every so often much to his annoyance.

I have learnt to deal with it as a parent I worry but I still have to let Callum live his life he’s nearly 18.

Anytime you fancy a chat just give me a shout

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Hi callum bless you its awful isnt it she goes uostairs i follow pretending to do something call her all the time shes getting so frustrated with me i left work and everything i just dont know what i should be doing ! Im sorry to hear about your boy and i hope he is doibg ok and he is getting on with his meds they all have side effects and that scares me too i dont want my daughter to change and i can see a bit of a difference already .

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I was 39 and had triple bypass, afterwards I started having them. I was out of work four times (six months between each one) before the doctor got the dosage right. I take lamictal 700mg which I thought was high. Then 16 years later (August 8 2016) I had one driving to work and total my car against a tree. People told me they couldn't believe I came out of it alive. The doctor then added keppra 500mg to keep it under control. So far it has helped, but now it is higher dosage I worry about my kidneys, liver, and whatever else. I heard that oil from marijuana plant keeps them under control works with no side effects. It just got approved here in Virginia, so I'm going to find out when I can get it. You might want to find out if it is available where you are at. Hope everything turns out well for her and for you having to worry about it.

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Hi im sorry to hear about everhthibg you have been through sounds lije you been through the wars ! A few people have mentioned cannabis oil but i dont think its legal here in the uk but itcdounds good if there is no side effects id be scared that it may trigger a seizure though i hooe it works for you please let me know what you think of it and if its helpedconce you have tried it .

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I will keep you informed. Just waiting for it to get through to the doctors so they can write a prescription for it. It just passed in our state so it might take awhile.

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Ok hun good luck x

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Hi Gemma, I know exactly how anxious you must be, my sister is 47, has Epilepsy and learning disabilities too, her seizures are not very well controlled, she's on Epilim, Tegretol and Midazolam and Clobazam for rescue Meds. I have started her on CBD oil only yesterday having researched it since December. There are thousands using the Oil and having some fantastic results. There are lots and lots of advice groups on Facebook and the internet, look them up, do your research. CBD Oil IS LEGAL in the UK, its the THC part of Cannabis that isn't but lots of people have had success using only the CBD. Its a minefield of information but as I said there are loads of supportive people out there who would gladly give you some advice .CBD is classed as a food supplement, your Neurologist may know something about it and support you but I doubt it as the usual mantra is ' its illegal' when it is not, usually if your GP/Neurologist is young, they may know a bit but generally the older ones don't and have never learned about the benefits in Medical School. I don't know how my Sister is going to react to it but its a chance that I must give her to see if we can give her a better quality of life without all of the horrendous side effects of the cocktail of Pharma drugs that she is on, there are no horrendous side effects to it, my husband has also been taking it for Chronic Lymphatic Leukaemia and his blood levels have come right down since December. Please try your best to relax a bit, I know its hard and it effects not only the patient but the whole family.

Do your research and learn as much as you can , your daughter can research it too. Good luck with your journey, its going to be a long, tough road but one that YOU must be in control of and please, if you don't agree with your Neurologist, challenge them.

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Hello gemma26 my son was on keppra now on levetiracetam he was 16 when diagnosed with epilepsy is now 18 and yes he had everything to then get it all taken.his driving licence taken and then In replace of that was a Bus pass and me by his side every miner of the day it does get to him but he picked him self back up and carries on I do hope the same is for you and your daughter his on a high dosage of the new tables to and his perfect with them good luck xx

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