Stupid bloody hospital

[needmorecoffee]

Was all packed this morning for DD's 48 hour ambulatory EEG. Called the hospital before we set out. The neurophysiology dept forgot to book her a bed. We've waited 8 months for this bloody EEG and it had to be cancelled cos there#s no bed.
Am fuming. So called and madea fuss via PALS. Eventually had the on-call neuro phone me to say DD's 20 min EEG showed problems but she can't discuss it with me till she finds a consultant tomorrow. WTF!
I hate lousy stupid crappy treatment while DD's seizures get worse and worse. And am worried sick that the EEG shows she's developing something terrible like Lennon-Gastaut syndrome [sad}

[cornsilk]

That sounds really bad.I'm not familiar with the terms you used but the hospital sounds ridiculous.

[berolina]

Blo*dy hell, poor you. I'd be incandescent.

[needmorecoffee]

EEG isa thing that shows whether seizures are happening or not in the brain. Lennox Gastaut syndorme is a type of epilepsy that starts about 3 years of age and causes uncontrollable seizures and mental regression. Its not fun.

[Peachy]

You know it could well be nothing as severe as that don't you? It's pretty damned evil of them to leave you wondering though- really cruel! Hugs to you.

[r3dh3d]

Peachy's right. It could be anything, there are so many sorts of E or things like it, without needing to look at the rough stuff. The on-duty neuro may simply have been a registrar who isn't allowed to talk to you - depending where it is, but sometimes there is no consultant on duty in a specialist neuro ward.

What a complete fecking shambles about the 48-hr telemetry: can't believe they forgot to book the bed ffs how does that work? Surely it's a specific room, and if you book the telemetry equipment you book the room with it? It's like that at GOSH or was when we did it last.

I remember this period well - no control and seizures going downhill as they try various meds. Even once they understand the problem it really is just trial and error till they get the right meds: it's not just about the wiring of the brain, it's about how your LO metabolises the drugs so what works on child A for condition X might not work on child B for the same condition. Hugely frustrating, though. What is she on at the moment?

[needmorecoffee]

DD had Infantile Spasms as a baby hence my fear about LGS (its a 30% chance of going from on to the other). Right now she's on vigabatrin and lamotrigine and last year only had 2 status seizures. This year its non-stop so something has changed. I've een asking for an MRI in case her brain damage has got worse or she's developed a cyst or tumour (my imgaination has been going wild)

And I want to make sure someone knowlegeable interprets the EEG. LGS has a very specific slow wave background pattern. DD's last EEG (18 months ago) showed some slowing but lots of spiky bits (normal for brain damage). So I'm sat here all nervous. DD's usual paed is away till friday and I trust him to interpret things properly. But so cross that you book an important procedure and someone arses up.

[needmorecoffee]

Update here. PALS came thrugh. Had the neurologist on the phone apologising for the bollux up and he's fitting us in next Tuesday for a 12 hour EEG. He also said her last EEG results were 'normally' abnormal with nothing scary. And he's given me his mobile number tellling me to call if there's anything I'm worried about.

[r3dh3d]

That's good news, nmc. Very good news! .

I think MRI is a reasonable request. DD1 has had 2 and got a couple of clear diagnoses off the back of them which has been useful, if only to rule stuff out iyswim. It's interesting how they could diagnose stuff from #1 that they couldn't from #2.

I've found with DD1 that her reaction to meds has changed recently (she's 3 1/2); she's grown into some meds that were previously useless to her and grown out of others. So her Valproate is useful now whereas her Topiramate isn't holding her as well as it used to. I think it might be because of the way the brain is maturing. But E is such a varied disorder I don't know if you can draw any parallels or not.

Fingers crossed the 12-hour EEG catches everything they need.

[needmorecoffee]

Its the brain damage that confuses everything. She doesn't have 'normal' epilepsy. And brain damahe always leads to an abnormal EEG that will freak out any neuro who didn't know DD has this brain injury.