Focal seizures

[Grapesandtea]

My DS had 2 focal seizures out of nowhere. We ended up in hospital after first, discharged and admitted after the second one. Both didn’t last long but he was very groggy afterwards. It starts with one of his legs. I cannot sleep tonight and tomorrow we are supposed to have MRI so I cannot calm down lying next to him tonight. Any words of wisdom from anyone?

My husband had a seizure (tonic clonic) out of the blue last year - it was such a shock. He had multiple tests and no cause was ever found - he hasn’t had another, in more than 12 months.

It must be really worrying for you but try and get some sleep - your son will be in good hands…

Wishing you well tomorrow and hope the scan goes ok 🌺

So 4 seizures now in total, emergency CT absolutely clear, a bit of runny nose but nothing else abnormal. They look like tonic clinic one not focal.It is heartbreaking

Sorry to read this - and hope you get some answers soon. Must be v scary for both of you.

Sorry to hear this OP, my dd had a series of tonic clonics around the time she turned two, clear eeg, ecg and mri we never did find the cause but it’s been a year and a half clear now. I hope you have a similar story. Our epilepsy nurse was amazing, you can ask to have one assigned to you.

I get focal seizures. It started about 18 years ago and for years I thought they were scary panic attacks. When I was finally diagnosed by a neurologist it stunned me it was epilepsy. I tried many drugs abut Lamotrigine has pretty much solved the problem. Don’t give up, there are options and you will get there in the end.

Can I ask you - what sets your focal seizures apart from panic attacks? Are you fully conscious?

yes I am conscious but in a sort of horrible wild mini internal horror film of my own for the few minutes duration. There is no catalyst for them. One minute I’ll be making a cup of tea and get an aura and know to get myself curled up, or I’ll walking done the street and need to stand against the wall and see it out. They are hideous and I always get the aura a few moments before it hits. I used to go months without one then get one daily for a month. 200mg of Lamotrigine in the morning and 100mg at night has all but seen them off. That is quite a high dosage I think, everyone differs so she does need to see a neurologist. I’m very lucky my hospital is St Thomas’ in Westminster and am under Dr Holmes with whom I have a direct email to. Good luck, I do hope she gets the help she needs.

That sounds awful @Mistyglade How terrifying! You must have been relieved in a way to get an epilepsy diagnosis - rather than wondering what on earth was going on?

@Grapesandtea How’s your son doing?

Thank you all. We had an absolute rollercoaster over the last few days. Had a clear brain CT and MRI but also EEG didn’t really show anything. They gave him antiseizure drug - Keppra I think but he had two funny episodes where his chest feels funny and he gets confused for few minutes. Doctors want to send us home but I’m still worried.I might book a cardiologist and neurologist privately as I have private insurance through work. It feels like they no one in hospital is interested anymore after the brain scans came back clear.

Good news that scans have been clear so far … but of course you must still be worried. Does sound like he needs a referral - can you push to see a neurologist?

Firstly I know how worrying it is, been there. The reason why the hospital will not appear too worried is that a cluster of seizures is not that uncommon and may never reoccur, if and I stress if, as it may not be the case, they continue they will start further testing including genetic tests to identify whether there’s any complicating factors but for many dc including mine they have a small cluster then nothing for ages, my dd typically went 3-5 years between clusters then nothing since age 15.

@CapricornKitty he did see neurologist in hospital and they just started him on medication, weren’t interested in his 2 funny turns, I looked privately but can only get something in June, which is just making me more worried
@minnienono that’s reassuring, what I worry about he still has funny spells and they didn’t think they are silent seizure so of course I worry as he is scared to leave the house or go to school next week. He already started medication, can I ask if your dd was of medication?

Hopefully things will settle down now - all the best 🤞🏼

@Grapesandtea how is your Ds getting on now? Has he had more seizures and did you manage to see a private neurologist?

@Ogello thank you for asking. My son is on meds and thankfully seizure free after the initial cluster. We had to do all the tests and change original meds due to severe side effects privately as NHS did nothing for several months and left us traumatised. But all his MRIs, heart tests and EEGs were clear so we are treating is on the basis of clinical diagnosis of the initial cluster. I feel very bitter about it all and them missing couple of things when we were in hospital. It has been a long and very difficult time for us but he is well with just some occasional auras.

@Grapesandtea my 2yo daughter is having black spells and jerks and all results have come back normal. Could you share your sons symptoms and how are you treating?

And suggestion would be helpful as my toddler is having the episodes daily since past 22days

@Malamummy really sorry this is happening to your daughter. It is hard to advise and compare as my son had TC. What we found was that any symptoms are being dismissed as normal and diagnosis is very difficult.

Did you have telemetry at home or hospital? Were you referred to neuro or just paediatrician? What tests did you have? Can you afford to see someone privately? If not you should be able to request second opinion. We found that huge number
of children with seizures have clear tests.

There is a very helpful facebook group where you can ask for advise on what to do next - Parents of children with epilepsy uk