Child diagnosed with Epilepsy frightened and confused

[Mammyoffour]

Hi new to this, looking for advice my beautiful daughter has been diagnosed with epilepsy she's only three and it's absolutely broken our hearts. We're so frightened she needs an MRI under sedation which terrifies me, her EEG showed frequent spikes and sharp waves on mainly the right more than the left over both central parietal regions.
I would really appreciate any advice or if any parents are going through the same, we have support from her epilepsy nurse but just to hear it from other parents could help us greatly
Thank you

She has been prescribed Levetricetam 2ml per day

Been there, although my son was older (14) when diagnosed. It is terrifying but manageable. You really do need to trust the professionals, what is terrifying for us is their normal. The MRI and ga will be fine, much worse for you than for your child. They will explain everything in an age appropriate way and depending where you are, there may be specialist play workers. Leviceteram works for some, not for others, it’s often the starting drug but there are many many more if it’s not effective or she finds it hard to tolerate. Hang in there!

Young Epilepsy is a wonderful charity, lots of information and support. It’s been a lifeline for my son, and for us!

And this is a good group.

Thank you, I just feel sad for her. Myself and my husband hardly sleep as we're scared she has a seizure through the night again.The consultant and nurses have been great just feel like at her first appointment when we were given her diagnosis it was so much of a shock we didn't take it all in.

Thank you so much I'll take a look

It is hard. There are lots of alerts you can buy for nighttime. My son is older so I’m no expert in little people devices but I’ve read about cameras that detect and alert to motion (Sami, Tapo are names I recall) mats for under the sheet that detect motion etc. And sleep safe pillows - do considered. A charity called Hope for Epilepsy can provide them. Ask on the facebook forum for advise.

I applied for a sleep safe pillow earlier and have had confirmation she is eligible, they also sent me loads of information to help !! Honestly thank you so much I would never have thought of the pillow..you've been a great help

This might be useful. There is also an app
https://www.seizuretracker.com/

This is Epilepsy Action’s page on alarms and monitors choosing the appropriate one and funding.

https://www.epilepsy.org.uk/living/safety-equipment/alarms-and-monitors

I hope Keppra works out for you. It is a bit of a marmite drug. It is either fabulous or rubbish and the split is roughly 50/50.

I was diagnosed at three, I don’t take nocturnal seizures though.

Check out Epilepsy Action and the Epilepsy Society as well as Young Epilepsy if you haven’t already.

Please empower yourself regarding the condition and encourage your daughter to do so as she grows up.

Just because you have a great neurological team just now doesn’t mean that at some point you won’t encounter some clown who isn’t an epilepsy specialist and has spent their whole time as a neurology consultant specialising in something else.

Educate yourselves.

Thank you so much, it's really hard but far harder for our little girl and she's a tough little cookie so trying to be strong just like she is. I feel like our worlds fell apart but trying to get as much knowledge as we can. The Levetricetam seems to be working but have noticed a change in her behaviour since her dosage was upped..fingers crossed it's just her being a naughty three year old and not the medication. Thanks again for the advice it's really appreciated

To be perfectly honest, other than the initial flashbulb memory of the sunlight flickering in Princes Street before the seizure, my memories of epilepsy when I was three are pretty vague.

There are also ‘nice’ seizure memories. Dad smuggled in smarties to the children’s ward and Mum (who was always a terrible cook) made me bacon sandwiches and tea when I was post-ictal, hungry and tired (not the first aid they usually recommend but…)
Children remember odd things and in odd ways.

With any luck, especially if you achieve good control. It will become part of life. People I know who were diagnosed later on in life are devastated. It really feels to them like grief for a self that they have lost.
If it is all you have really ever known although, although there are restrictions, and the drug side effects can suck, career opportunities are far better than when I was young and unis and school are more forward thinking (though I went to uni again as a mature student and DSA was horrendous!!)

Side effects are dosage dependent. The awful ones relating to Levetiracetam tend to kick in at higher dosages if they are going to occur.

This is what I mean about empowerment. Epilepsy Action used to have courses and a forum. You could pick up some good advice.

Have you seen this?
https://www.epilepsy.org.uk/info/treatment/anti-seizure-medication/switching-between-different-versions-of-epilepsy-medicine

The thing to watch with category 3 is the ‘usually’ and ‘extremely low’. Which means the likelihood isn’t ‘never’.

The best tactic is to keep an accurate diary.

If you become unhappy with the side effect profile of Levetiracetam there is another option that you might be able to bring up with your neurological team.
If the control is good then Brivaracetam, which is an analog of Levetiracetam is a possibility.

Has your DD been diagnosed with focal seizures btw?

Hi thank you so much, Yes she's been diagnosed with focal seizures, she had two and finally was referred for an EEG which confirmed everything in July
(after the first I knew something wasn't right but the hospital couldn't act on it,I felt like they thought I was just a worrying mam but I knew there had to be a reason as they weren't febrile as she had no temperature), she has her MRI in November. The first two seizures were horrific I had to call an ambulance , the third was more a blank stare that didn't last very long at all but It's just the constant anxiety we have ATM with sleeping..whether she'll have another seizure through the night so were sleeping on her bedroom floor or having her with us in our bed. It does give us hope reading your experiences that it'll get easier over time, we're just trying to keep everything as normal as possible.
There's a few things she's mentioned since she's started on medication such a her top lip feeling like burning although that hasn't happened in a little while, she screamed the house down about a horrible smell which wasn't there !! Her nurse didn't think it was epilepsy or medication related. I'm not so sure about her behaviour like I mentioned before she started biting which is something she has never done !! She's been aggressive at times and short tempered but it's very hard to say if it's the medication although only started since prescribed it. The medication has really helped with sleep so that's a huge positive for us, our daughter was a terrible sleeper and would wake up throughout the night obviously could of been activity in her brain due to the epilepsy but at the time we didn't know..And also she has only had one small seizure (we think) since she started Levetrivetam so hopefully it's working, not sure if they've found her therapeutic dose yet.

Epilepsy Action run an online parents and carers support group every four weeks as well. It’s helpful to know you’re not alone 😔

Have a look at this from Young Epilesy, may be useful!
www.youngepilepsy.org.uk/building-stories-together?fbclid=IwdGRjcANA7UlleHRuA2FlbQIxMQABHt2JoCbNl3GNFU2nyZ5GrcrmQEULi_aTimVcPJbH0a_IE6Q6rOIqV4PG6R0P_aem_RABjdGD1SrR6OkbLYtXp2A

That's so lovely!!! Ordered..thank you so much 🙂

Please remember a couple of things when medical professionals tell you that they don’t think it is the medication:

They aren’t the ones taking it and in my experience even the specialists don’t know all the side effects.
I started to faint when I was on Levetiracetam. It only happened at higher doses and it only ever happened on Levetiracetam. My husband won’t talk about the 18 months I spent on that drug and it made us both very cynical. It was part of a huge push to get women of childbearing age off valproate (which has always been the best drug for me and the push to get us off it caused me huge problems as I was told the risks back in the 80s and made the decision not to have children of my own many years ago), we were just told to ‘stick with it’ for far too long, until finally my husband lost it totally with a GP and I was referred to a neurologist (our local hospital had been without one for ages and the temp had an horrific waiting list.)

They want you to adhere to the drug regimes so they will minimise the worst of the side effects. I have had : Valproate can make you gain a little weight/ Topamax might make you lose some weight/ Levetiracetam might make you irritable and Clobazam will give you a good night’s sleep.

Some people do experience weird smells, frequently as a precursor to a seizure. There is a book ‘The smell of burning’ I couldn’t get through it because he kept using the word ‘fit’ but, if reading helps….

Im not entirely sure, I work with children in a sports environment and pre-school kids can have problems explaining different difficulties with skills. It may be that your DD just doesn’t have the words yet to explain exactly how the drug side effects are affecting her. Meltdowns and biting may be the closest she can come to expressing the changes that the drug is causing.

It’s awful isn’t it.
Our beautiful daughter was diagnosed 2 years ago. She’s 15 now. She has tonic clonic seizures and focal seizures. She takes Levetiracetam ( no serious side effect except tiredness) but I don’t think it works for her at all. She’s on the highest dose. Also tried clobazam, also didn’t work. Now on lamotregine as well and she’s been seizure free for about 3 months - she was having weekly tonic clonic seizures. Hope to get her weaned down on Keppra at some point.
Side effects are mostly short term but mood issues is definitely a big one for Keppra.
Sadly the Lamotregine messes with her sleep patterns, some insomnia and can bee very fatigued. I thinks she’s also had some hair loss. Is the best worst option for now.

It is the most difficult things one ever had to deal with. She has been amazing. My heart breaks if I think about it too hard.

Apologies for the typos at the end! Should read I not one!

It must be so hard for you 😔 Having an older child with epilepsy must be so much harder because they understand what's going on and that must be scary. I couldn't imagine having to cope with seizures on a weekly basis it would break my heart... I'll keep everything crossed for your daughter I really hope things settle as being a teenage r is hard enough without having epilepsy
Thankfully our little girl has only had three but seeing it has honestly just shook me so much I'm forever panicking I wish I could take it off her and have it myself 😔

Your advice has honestly been so helpful, seriously I'm so grateful and thank you for sharing your knowledge and experiences.
I did feel as though the nurse wasn't wanting to blame the medication..I suppose it's hard when she's not seeing it first hand, I did feel a bit stupid like a daft anxious mum.
My daughter hasn't been well today..think it may be croup ( she had both her seizures after being poorly with croup) I'm worried sick incase she has another, please tell me it gets easier with time because I feel like all I do is worry..I just love her so much I wish it wasn't happening

I’m not sure I can say it gets easier but you do become better at handling and responding. After her first one I had her sleeping in with me for a week! I went everywhere with her until she had to go back to school ( it was a holiday ). We have had to adapt. I worry about her all the time. I have to say I get a lot of my strength from her because she has been incredible. She doesn’t let it stop her at all. She has dealt with the meds and tests without a murmur. Her friends and school have also been fantastic. She’s had a few awful ones at school. Very public but her friends have handled them so well. Fetched help, stayed with her had some first aid training to know what to do. If she can be strong, so can I!
I’d give anything to take it away.

Never feel like you are being daft and anxious.
You are definitely being neither.
This is new territory and this is your daughter, often to medical professionals you are another patient.
I know I seem cynical but I’m posting this coughing up yuck, with a sore head, joints and stuffy nose. I saw the doctor when my throat was sore and the cough wasn’t keeping me up at night. I was told it would be acid reflux from the drugs - again. It wasn’t/isn’t.
Regards illness, it does lower your seizure threshold even if you are on medication.
Any fever, infection and dehydration, brought on by vomiting and diarrhoea can affect the brain's electrical activity and electrolyte balance.
At the moment, I can testify to this. I’m calling in sick not simply because I don’t want to cough all over everyone, I have had a couple of warnings regarding potential floorward crashes.
Considering my head hurts already, I just want to stay at home and get well.

I hope your daughter is feeling better today. I’m sorry I don’t have kids I don’t know how long it takes to get better from croup.

I can’t tell you that it gets easier, the other Mum’s will answer that question. What I can say is from my own story, my seizures were pretty much all triggered by some form of lightning, pattern, or mass of visual stimulus taking up my field of vision. I don’t do big stores or supermarkets.

My epilepsy went nuts in my teens.

I used to call home (or a friend would, in the days of phone boxes and pay phones) and one of my parents would collect me. I was normally tearful and angry. I don’t remember either of my parents ever saying anything in those trips. At home I just slept…. for ages. Mum woke me up with a bacon sandwich and tea and it wasn’t mentioned again.

I kept going out. I kept having seizures. Sometimes the ambulance picked me up and sometimes it was my parents. Then I started picking up my own prescriptions, changed my doctor and gradually, stopped phoning. I arrived home unscathed, usually with the help of a friend or a boyfriend (one serious one became a paramedic, I don’t know if that was my fault 😂). I don’t know if that made it easier for my parents, but it probably made it a bit easier for them when I left home.

I’m reasonably well controlled, but everyone I know has a crazy story associated with my seizures. They are just part of who I am, after 54 years I wouldn’t be me without them. Time blurs how awful you think things are. The Levetiracetam years are over a decade ago and sometimes I think ‘We’re they really all that bad?’

Yes!😂

sorry!