Any experiences of epilepsy/status epilepticus in their child?

[kelda]

My ds aged 7 is currently in hospital having been admitted to ICU with status epilepticus. He fitted for nearly an hour before they got it under control when they intubated and sedated him. He has recovered from the fitting and is on a normal ward, having more tests including 24 hour EEG and next week MRI.

He has had behavioural changes over the last few months, including huge anger outbursts. A couple of weeks ago they thought he had Tourette's. But now they are looking for a cause for everything - behaviour, tics. epilepsy.

The absolute worst is going through my mind.

I have no experience with epilepsy but didn't want to read and run. for you, it sounds like he is in the right place for tests and treatment but it must be very frightening for you.

Thank you. It's just waiting now for answers. At least I can stay with him and all going well he can come home for the weekend.

My friend's four year old son had a fit last spring, followed by a couple more and it has got worse since then - he has had lots of tests and they don't know what is causing it. They have tried different levels of medication and he now hasn't had a bit one for a while but has up to 100 mini seizures a day, which can either be him just going 'blank' for a short time or jerking suddenly - it can lift him off the ground.
We noticed changes in his behaviour beforehand too, he used to be quite a calm placid child however before his fits started he had periods of becoming very manic.
Sorry I don't have any answers, just wanted to let you know you aren't alone. My friend, his mum, said that the worst thing is not having a quick diagnosis and having to accept that she may never have one. I really hope you and your son will be ok and they find a cause that is easy to treat.

Thank you. That is interesting. Currently waiting to go down for the MRI.

Hand holding from here.

My niece has been diagnosed with focus status epilepsy. The most severe combination. It has been fucking horrendous I won't lie.

Her seizures don't stop on their own. She reacts violently to diazapam (respiratory arrest) and her trigger seems to be febrile temperature. It took 12 months to get a diagnosis as they kept saying it was febrile seizures.

The good news is she is doing better on epilepsy meds. They had 3 months seizure free then the first medication started to not work but her seizures were still less severe. Just tweaking her meds again.

My advice is keep a diary of everything. My dsis writes down everything. It has helped enormously identify patterns. Also try and find out if your hospital has an epilepsy nurse. Ours does and he has been fantastic with them.

I hope that the ct scan goes well and you get some answers soon.

Thank you again. It's sad to hear about what these children and their parents are going through.

The CT scan was last week and normal, today it's MRI under general anaesthetic.

how did it go kelda? Did you get any answers?

No answers yet. MRI was clear
They think he has a condition that links his speech disorder, behavioural problems, tics and epilepsy. It will be a while before we get an answer, and I'm not sure if I want to know.

Hi Kelda, empathy from me. My DS has been seizure free for a while but suffered from a particularly nasty form of epilepsy as a small baby. It's very frightening. I'd advise keeping a diary of any activity that you think is odd and wherever possible take a video, trying to capture his face (eyes in particular) when anything strange happens. If you don't feel like you're getting the answers you need you might need to ask for a referral to a tertiary epilepsy centre. Our DS was eventually referred to the paediatric neurologists at GOSH because his case was not usual. From the minute we walked in there it was like the sun came out - the teams at the specialist centres are so, so knowledgable. After months of worry he was diagnosed and treated based on little more than an EEG, an examination and a video I had taken and treatment began immediately. We then went on to have metabolic and genetic testing as well as the EEG MRI etc that your son has already had.

There is such a lot that can be done to help children with even the most severe forms of epilepsy. I hope you won't have to wait long to find a cause for his seizures although a clear MRI is a huge relief I'd imagine.

What did they say about his EEG?
Was that normal?

Tinymrscollings Thank you for sharing your experience.

We are lucky to live so close to a huge european hospital with many international specialists (we are not in the UK).

He has already had a CT, MRI, lumbar puncture, eeg, and 24 hour filmed EEG. Lots of blood tests including genetic and metabolic. I have lost count of the number of doctors and specialists who have seen him this week.

The 24 hour EEG showed a lot of small fits at night, hence clobazam being started.

When I thought my DS had epilepsy I joined a very helpful paediatric epilepsy page on Facebook.

Picture attached to show you name and banner picture.

Thanks for that, I have requested to join.

It's hard to find supportive groups.

Oh that is really great news. Sounds like they're all over it. It was a battle to get what we needed for DS (almost identical list to what you mention above) so I always assume it might be the same for others with seizure conditions that present unusually.

Best of luck, look after yourselves. You need proper acetone-based nail varnish remover and baby oil to get EEG glue out of hair. I wish it hadn't taken me 6 months to work that out, thought it might help.

He had a great time with the comb getting all the bits out of his hair! His hair is short so not too bad.

I am grateful that he has had so many tests all in a week.

It makes up for the last few months when I took him to the GP twice with what I thought were absences, and what she said was sleep paralysis.

Also he was admitted a few weeks ago for observation, and they told us not to worry about any neurological cause for his behaviour and tics, so they didn't do anything.

Glogirl, I sent a request to join the group but I assume it was denied so I have requested again today.

Sorry I'm not in it any more so I can't advise I'm afraid. There are a few others I saw but that one had the most traffic. I think it took a while to be approved. They might not check the queue often . If you struggle I can try adding myself back in and posting about your request. Let me know x

Thanks, they have added me now.

my 5 month old has a severe neurological condition and has had neonatal spasms, epilepsy, seizures you name it she has it.

I don't have much to add other than I feel your pain !

Thank you JellyBaby26, it must be so hard to see your baby sick.