saw neuro today and he said he didn't know what dd's changing seizures signified or whether we should start the keto or wait n see and said EEG's are too crude with brain damage to be useful. Could he get any vaguer! And he said we should decide whather to do ketogenic or another med or wean one of her current meds. Thing is, I'm not an over-paid paediatric neuorlogist ffs!
My God. What are they paid to do exactly? Will be thankful for the lovely communicative neuro we have! If I ever win the lottery, you can nip over the bridge and live here, I seem to have it so much better <<very grateful emoticon>> Can you get a second opinion? More senior neuro to go through the results with you so at least you can make an informed decision? It's crap.
we also see her paed and he was just as vague. Her brain damage just comlicates the EEG reading and no-one really know what it means. Thats the problem with intractable epilepsy. It comes and goes, often with no correlation to changing meds. Extremely fustrating.
Sorry your going through this again NMC. As feelingbitbetter we are blessed to have a great neuro but then I guess he helped us through the IS and thats been it, no other complications for him to work with us on.
I think dd is just a bit complicated. Having brain damage means she is likely to have epilepsy. Having had Infantile spasms puts her at risk of the more horrible syndromes (and she started developed lennox-gastaut last year) but no-one knows why some kids get them and others don't and why some kids end up regressed and some don't and why some drugs work for some etc etc Hence the vague neuro. I'd feel happier if they did more EEG's but its not the policy here.