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DD 5yr old started having seizures

3 replies

Overthinker01 · 09/05/2025 14:21

Hi all,
I haven't posted on here before so hopefully doing all this right!
I am reaching out as I am overcome with worry and hope that someone might be able to offer some reassurance/advice.

My daughter is 5, and has had a hard time health wise! She was born v. prematurely at 25weeks, and also diagnosed with congenital heart disease (she has had 2 open heart surgeries because of this). Other than this, she is a healthy, active and healthy 5yr old.
She had a full seizure last year in March. (told tonic clonic) - she was ill with a virus at the time so A&E told us it was Febrile and that was it. (although she didnt have a particularly high temp)
Nothing then for a year, until last week where the same happened again at school. A tonic clonic and was taken to A&E by an ambulance.
She has been referred for an EEG and epilepsy clinic which are both in 2 weeks time.
THEN yesterday, my daughter then had 2 more, one first thing then one in the afternoon. Both very different from before, she was conscious throughout both, called me over first like she knew something was happening. First she clung to me, spaced out and had a very slight tremor for about 10 seconds. 2nd one she really focused in on her leg and fingers. Was sick afterwards then wanted to go straight to sleep.

I'm so worried about what could be causing these. We've spoken to her cardiology team who said that they aren't linked to her heart issues. I'm terrified that we will be told she has structural damage or a brain tumour. I don't know how I'm going to wait another 2 weeks without answers, but also terrified to know!

Sorry for such a long message

OP posts:
WonderingWanda · 09/05/2025 14:25

I know this must be really scary but there are lots of reasons for seizures. The EEG will be able to tell them a lot more about the seizures and what might be the cause. My dd had them as a baby but has grown out of them.

Overthinker01 · 09/05/2025 14:28

sorry that was meant to say born 28 weeks.

OP posts:
Downbadatthegym · 11/05/2025 23:17

My daughter had some sudden onset seizures when she was around two years old. If the EEG doesn’t tell you anything they will order an MRI, our epilepsy nurse was very “on it” once she saw a video of the seizures she confirmed epilepsy (with agreement of two doctors) and prescribed medication straight away, checked in on dosage often as it has to be worked up to the therapeutic dose.
We actually never found a cause for the seizures but have been 18 months clear. Sending positive thoughts to you and your daughter.

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