Baby Seizure Advice

[biglill]

My 6 month old son who had meningitis at birth and has resulting damage has started having seizures over the past few days. He had them in the immediate aftermath of his meningitis and we controlled them for three months with phenobarb and kepra, I was so happy when he was weaned off the drugs and seizure-free.
These new seizures don't seem to bother him, he is having around five each day and the paed thinks it may be a result of a virus being on board. He said to give it the weekend and if they are still regular we need to think about going back on kepra. I am worried as there are risks the drug can hamper development (which is already at stake as head circumference has dropped through centiles). I am thinking of pushing to stay drug-free for longer and just put up with the seizures but don't really know what to do for the best. Anyone able to offer advice or has experience would be much appreciated.

Hello biglill

What a shame the seizures came back. I know how disappointing it is when you think they're over and done with and then they return.

There are a couple of charities you can talk to. There is the epilepsy society and young epilepsy - sorry can't link on phone but easy to google.

I prefer to chat to the people at young epilepsy but that might just be down to who I've had on the other end of the phone.

No reputable charity will dispute the advice of the dr who is treating your son but they will be able to talk to you about the drugs and help you decide what questions to ask.

The issue with not giving your son the medication is that the seizures may worsen and possibly become more dangerous so your doctor will need to balance that against any side effects of the medicine. Remember you are entitled to ask for a second opinion.

I would advise giving the meningitis research foundation a ring about this and having a chat. They are super helpful and very understanding.

Many thanks for useful replies. The Meningitis Research Foundation were wonderful, two specialist paeds replied to my query and gave me the peace of mind I needed that going on the meds would be the best step at this moment in time. I don't know how long the keppra takes to kick in but we have been on it two days now and the seizures are still coming thick and fast. Should I consult paed again or am I being impatient? We have EEG booked for next week, does anyone know what we might get out of that, I switched off due to information overload! Thanks again.

Ds had a EEG a couple of weeks ago. He also had meningitis , no seizures at the time but has absences since.
His EEG was looking to see if the pattern was like typical epilepsy. They said baby brain waves are erratic anyway so harder to interpret. (Sorry v basic understanding).
They also suggested that an MRI might show if its brain damage but that it would be a long way away/involve sedation and long way down the list for him.

I would contact Paeds again btw just to ask how long it takes for meds to work.