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Alistair
Alistair Community member Posts: 102 Listener
edited June 2014 in Children, parents, and families
Following on from the General aesthetic thread my daughter has been asked to have an 'Ambulatory Monitoring EEG'. I only looked at the leaflet that came with the appointment letter yesterday and was shocked to find out that she is expected to have all those wires attached to her head, wear a belt with battery and monitoring equipment, leave the hospital and carry on life as normal for at least 24 hours! I just can't see it happening. She can only just tolerate wearing a pad, never wears a belt and throws off hats after a few minutes. Anyone had any experience of trying to get their child through this?
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  • Heather
    Heather Community member Posts: 168 Connected
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    WOW that's a big ask! My son went for the sleep/video monitoring. But they didn't manage to sedate him, so we agreed we would never know the root causes for his epilepsy. As quick as they fitted the pads to his scalp the quicker he pulled them off. We were there 6 hours before all agreed it was never going to happen! GOOD LUCK!!!!!!!!!
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  • Alistair
    Alistair Community member Posts: 102 Listener
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    Thanks Heather. I've been thinking about it and I don't think I'll put her through it. Tomorrow I will phone everyone: Doctor, school and social worker to get advice. But I don't believe that it can be worth the stress it will cause her (and me!).
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  • Heather
    Heather Community member Posts: 168 Connected
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    Hope you get some straight answers Alistair. When we returned to our GP he did ask if we persued the EEGs and discovered some brain abnormality would we have given permission to operate and risk the possibility of more damage? Our response was to count our blessings and not look any further into the cause, just cope with the current issues. We couldn't put our son through it again and to face a decision after that might have been even worse...who knows? But as it so happens, we are seeing the consultant in Feb'13 to discuss removing the epilepsy drugs and seeing what is lurking beneath. Possibility he's grown out of the seizures....fingers crossed. x
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  • Alistair
    Alistair Community member Posts: 102 Listener
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    Thank you Heather, I did! The consultant agreed to postpone the EEG. I said to him that if this test could finally say if they where able to control or even cure the cause of her seizures then it might be worth the stress. Advice from school said that she should really have a 24 hour stay in hospital to undergo the test. So maybe cost related? I hope I've made the right decision.
    As for your son. Good Luck, my girl had her last seizure (only the second one) as we were reducing her meds! I'll be thinking of you and keeping my fingers crossed too.
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  • toast
    toast Community member Posts: 46 Listener
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    Hi Alistair. We've had a couple of the ambulatory EEGs. Tbh it wasn't as bad as we thought. The head probes are firmly glued down so pulling them off really wasn't an issue like the hr EEGs. Also I understand its better done at home, in their regular environments / stimulii as it gives a better, more accurate picture of what's going on and potential triggers etc. It was a lot of work however filling in the diary alongside it - we were fortunate in that we coincided the EEG with when we had a carer. Maybe that's another way round it? Or at least try and get some help from friends / family. It pretty much is a case of someone writing down every activity / action. V difficult to do whilst living yr normal life / work / cooking tea and seeing to other kids

    Oh and you know I said the probes were firmly glued on? That was a birrova mare afterwards to say the least. Truly traumatic trying the get the clumps of glue out

    If you not going down this EEG road, best suggestion would be to try and video any suspicious ?epileptic activity. Keep yr mobile phone camera set to video and try and get that way

    Best o luck
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