Absolutely!
Always discussed, but their advice isn’t always what’s right.
Hi Mia,
So pleased you are healed! Always good to hear success stories.
Lily is still taking anti seizure meds at the moment. We are only 3 weeks post op so very early days.
I have to say that I haven’t noticed Lily ‘fitting’ but they are very subtle. She has the type where she just ‘isn’t there’ if you know what I mean. Prior to op her EEG showed that all the activity was coming from the AVM site so we are very interested to see what the next one shows post op. Fingers crossed it shows no activity.
Lily takes sodium valporate which does give her tummy ache and has increased her appetite - she ate like a bird before! They wanted to increase the dose but she really couldn’t tolerate it so she also takes Keppra in a small dose but it’s not very nice. Makes her very
moody which she isn’t naturally.
She will be having a cerebral angiogram in the next few weeks which will be interesting. We’ll know if everything has gone which surgeon was confident of so fingers crossed.
Hopefully, over time she’ll come off meds which would be perfect.
Lily will be monitored into adulthood as there is a chance the AVM will grow back but, should that happen, it will be caught early and gamma knife will be enough to treat it.
We have been so incredibly lucky with the outcome of the craniotomy and how amazingly Lily has coped, I’m confident she’ll deal with anything in the future - hopefully nothing AVM related.
Thank you so much Mia for taking the time and the interest in Lily’s story.
Keep well and just enjoy life!
Jackie x
2 Likes
Hey Jaxx,
Merl here from the modsupport Team
There are a few differing types of seizures from the thrashing type, sometimes called ‘Grand mal’ seizures, smaller full body seizures known as ‘Petite mal’
Those seizures that you mention are often referred to as ‘absence seizures’, with many reports of patients ‘Just not there’.
Some of these meds can have some awful side effects and it really can be a case of ‘trial and error’ to establish the best concoction for that individual patient.
Merl from the modsupport Team
Hi Sharon,
Of course we would never do anything with meds unless discussed with Lily’s doctors. I apologise if I gave the impression that we would!
I appreciate your concerns and you rightly pointed out that any changes with medication, regardless of purpose, should never be altered unless advised by a doctor.
Kind regards
Jackie
Hi Merl,
Absence seizures was exactly the words I was looking for except my brain wouldn’t engage! 
.
Lily is coping reasonably well with meds at the moment and we are reluctant to mess about with new meds while she’s doing ok.
I’m really hoping the doctors will start to wean her off in the future but as we are only 3 weeks post op I think that is still some time in the future.
Kind regards
Jackie
1 Like