Fits/convultions

[Hayleyw]

Hi, My little girls both suffer from convultions (twins) they are now 3 years old, one twin has minor fits that last a few mins and the other has bad fits that last 40 mins +, the twin that has bad fits has just come out of hospital, she has had lumber puncture, brain scan eeg which was abnormal 1st time then ok the second, the docs just put it down to febril convultions even though they say my daughter who has the bad one is unusual as they are so aggressive when they come and last so long nothing stops the fits and they end up sedating her! this is her 3rd fit since she was 18 months old, we have now been ref to Great Ormond street hospital for an MRI and a sleep EEG, just wondered if anyone els has been through this and what was the outcome? she is absolutely fine playing etc before the fit not even ill and no warning signs then when she fits she gets a high temp!

I guess i am the only one here to experience this then!

Have they given you any medication for her - I have heard of sedative suppositories being used for a prolonged fit. And paracetamol suppositories can be given for the temperature.

It's good that she will be followed up with an MRI and EEG. Two of my children have had EEGs due to fits and all was clear.

Hope all turns out well for your little girls.

You can get rescue medication prescribed - we had Diazepam and Medazelam. I would ask your GP, particularly for the twin who has the seizures which don't stop until sedation. My DD had an MRI and sleep deprived EEG which both came back as "normal". She was diagnosed as having epilepsy based on her symptoms described by me and seen at the hospital. Hope all turns out well.

We have been given Medazelam that we have to carry round with us.

My dd has had a number of very prolonged seizures - they started at 13 months and the first fit lasted so long that she had to be anaethesized and ventilated and put in intensive care - not nice. Her fits are not caused by fever - we have diazapam to stop the fits which although serious are not that regular.

We also got a referral to GOSH which is excellent because it has its own complex epilepsy unit. All her EEGs and her MRI have been normal. Her epilepsy has been termed "idiopathic" which means the cause is unknown.

We found the consultants at GOSH really good/helpful. One of them just saw me again recently because I had sent him a whole list of questions about whether to put dd on daily medication and he was happy to talk through all the worries/questions.

Happy to answer any other questions you might have.

Hi Soozbie, thats awful for you hun, my little girl had to be sedated to stop the fit but wasnt in intensive care thank god. Im glad the consultants are good at gosh hopefully they will be able to get to the bottom of it.