Hi. Not sure if this is the right place to post but after 5 weeks of seizures my 8month old DS was diagnosed with benign infantile epilepsy on Friday. It was diagnosed off the back of 4 films I have of the seizures on my phone and basically by a process of elimination. 2 EEGs, 3 ECGs, an ultrasound of brain and an MRI showed nothing wrong. He has had 22 seizures in the last 5 weeks and has now been put on keppra (increasing dose every 5 days-currently 0.5ml morning and night).
We are supposed to be going abroad next week for a week. I feel really anxious about it and currently undecided as to whether to go or not.
Has anyone else had this diagnosis? Feel a bit in the dark about it all at the moment and not really sure how things are going to pan out. Other experiences would be really interesting to hear. Thank you.
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Benign infantile Epilepsy
OMGBabyNo3 · 22/05/2016 21:46
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Don't forgot to update the travel insurance. There might be a massive premium as new dx and new drug regime.
I'd look at what hospitals etc there are near by and what care they have there. When do you have to decide? If it can be nearer time you can see how drugs go and if his seizures become less frequent.
it sounds tough.
to you
Both DS and DD had benign infantile seizures. DS were so few and far in-between (eg cluster of 3 then nothing for 4 months, then another 3 etc) that he was never medicated.
DD had 28 seizures in 24 hours and was put on keppra and it was amazing. She had one breakthrough seizure about a year later, we increased the dosage and she never had another one.
After a seizure-free year we took her off keppra and touch wood nothing since (she's 5 now).
Both started at 20 weeks (literally to the same day as each other, 3 years apart).
DS again seemed to grow out of them aged 2.
So definitely must have been something hereditary - they both were born with a low seizure threshold I think (was never connected to illness or a high temperature etc)
I can't advise you on travelling - I think that has to be your call - but I remember very well the constant vigilance and worry about what to do if we had a breakthrough.
Can you discuss an action plan with neurologist if you do have seizures (eg we knew exactly how much we could increase the keppra by on our own if there was a breakthrough)?
Thanks Marshmallow. Whilst in sorry you went through this too it's overly to hear from someone else who sounds like they have been through so similar. DSs have never been connected to fever or illness either. 28 in 24 hours?! You must have gone out of your mind with worry 
. Spoke to consultant about travelling today and he said he would if there were no seizures between now and Monday. He's given me a prescription for n emergency med (if he failed I come out of fit by himself after 5 mins). Still not sure what we'll do though!! X
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