DD Seizures

[CJones11]

I'm looking for others' experiences of their child having a seizure.

My DD is 2 and had 3 seizures on Tuesday. Two of them were at home with me and she had another in the hospital. They did an ECG and ran a lot of blood tests but everything came back clear.
Each seizure occurred when she was asleep and I believe they called them tonic episodes. She is now being referred for an EEG and to an epilepsy clinic.

Since then, I am struggling to sleep and to leave her alone. I'm wondering if anyone else has experienced this and it turned out to just be a random one off with no further seizures?

Hi there,
my daughter had a seizure at 7 months old, she was having uncontrollable movements of her arm into the fencing position and was described as ‘tonic fencing posture’ as well as shuddering episodes.
Her EEG was clear; they did a prolonged sleeping EEG which was also clear and her bloods were normal. we were under neurology until August (she’s 2 now) and it never happened again.
I hope your little one has a good outcome too 💗

My son has a different type of seizure, myoclonic. However, after some changing of dosage these have become completely controlled with levetiracetam (Keppra) and our neurologist says there is a chance he will simply grow out of them.

I hear you about the worries around sleep. Our consultant recommended an anti-seizure pillow and also video monitoring.

Best of luck and I hope the clinic brings you some answers.

Thank you both for the replies. I am sorry I didn't respond sooner. It has been a weird month.

My daughter seemed to recover well from he episode last month. But on the 20th, she had another seizure. I believe it was a focal seizure. We took her to A&E and showed them the video. They checked her over and sent us home with the advice to continue waiting for an EEG appointment and epilepsy clinic which could take 6 months. We felt comfortable as she came around really quickly.
Then everything took a turn for the worst. She between Monday mifht and Tuesday morning, she had 15 seizures at home. We took her back to hospital and showed them the videos. They realised she was suffering focal, tonic and tonic clonic and admitted her. While admitted she continued to have multiple seizures on the Tuesday. They had to give her a loading dose of keppra and another medication to try and control them. Thankfully they started to ease and her last one was the Thursday night. She stayed in hospital for a week having multiple tests like lumber puncture, bloods, EEG and MRI.
We were sent home yesterday with the news that she was in status epilepticus when we took her in. She's now on keppra daily and we've been sent home with buccolam to administer if her seizures persist into multiple or are prolonged. We have upcoming appointments with the epilepsy nurse and consultant as her results suggest focal frontal lobe epilepsy (sleep related).

I am relieved and devastated all in one. This is new territory for me and I feel out of my depth. We have 4 children altogether and this week has been difficult for us all. My 10 month old twins have been completely ignored by us. I'm hoping her seizures are something she will grow out of, eventually. She's had genetic testing done and that should give us more information. What a scary time 😔

I'm sorry to hear your news; that must have been unbelievably tough for you all.

Keppra has been wonderful for us so there is definitely hope that it will eventually control the seizures. We have been told that there is a chance of growing out of the type my son has, so this is also possible in some cases. The genetics will probably take a good while to come back but I hope you get some answers from the tests.

Hopefully your nursing team will be able to tell you more - fingers crossed they will be a useful resource for you. Wishing you all the very best.