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Benign infantile Epilepsy(11 Posts)
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.
Not the same condition but I would be extremely wary about travelling.
Where are you going (length of journey and access to hospitals the other end)?
Have you asked your consult what they think of you travelling?
As an aside Keppra has been a wonder drug for us.
Thank you. We are going to France, driving, not far from Paris. Have emailed consultant and epilepsy nurse today for their opinions. Good to hear what you think of keppra though!
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.
Thank you. It's been really tough hence why if we think it's safe to go I think it would do all of us good. Good point re insurance - will investigate tomorrow. Have a French speaking friend looking into local hospitals Eric for us already and she has already said she will write a summary of the last few weeks in French for us to take. He's not had a seizure since he had the drugs intravenously on Friday but I'm certainly not convinced it's going to be that easy!
Oh and we are driving and staying in centre parcs type accommodation. It's been booked and paid for for months so makes no difference when we decide. I suspect we'll finally decide about 5 mins before we go!
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)?
Oh ignore my last part - I re-read and see you are already on an increasingly plan.
In some respects you probably need a holiday now more than ever. x
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
Yes I expect it's midazolam.
Oh it was 18 seizures (not 28) in 24 hours (but still was an absolutely horrific night! One of the worst of my life)
Also (because this was the type of thing I was desperate to hear at the time), DD never seemed to have any adverse side effects from keppra (although being so young it was hard to know for sure). She's doing fine now!
I hope you get more peace of mind now your DS is on medication; and enjoy your holiday if you do decide to go.
Ah thank you. Yes that's exactly the sort of thing I'm desperate to hear! He had an MRI on Friday and needed two lots of sedation followed by a large dose of keppra intravenously. He was in a dreadful state sat/sun/mon-sooo drowsy and lethargic. I was terrified it was the keppra causing it but am starting to think now it was the sedation as my smiley happy boy seems to be back.
18 or 28 still sounds like hell! We had 6 in one day once and that was awful. I find them so upsetting to watch but am getting more accustomed to it now.
Thank you for sharing your experience. That's really helped x
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