Our son has been having tonic-clonic seizures (linked to tiredness, mostly in the evenings, not at night so far) for the past few months, during which time one of us has been sleeping in his room every night. Now medication seems to be controlling the seizures and we are ready for some better sleep but anxious about leaving him. Does anyone have any advice on what monitors are good and/or what to look for when choosing one?
Hi Robin, thank you for posting. We have some information about monitors on The Channel if you’d like to have a look. We can understand it’s an anxious time so hopefully some other parents may be able to share their experience with you too.
Thanks, that’s helpful to look and some more information. We are still taking to one of us sleeping in the same room to put our minds at ease. Keen to get some kind of monitor so we can get back to a normal sleep pattern though!
Hi Robin. As a parent, I can completely understand where you are coming from. Our son first started having nocturnal focal (non-convulsive) seizures around the age of 5 so we just re-installed the sound activated baby monitor in his room. Over the years his seizures changed and whilst our anxiety levels only ever increased, we didn’t go down the route of upgrading the monitor as we realised whatever system we had in place would not really calm our fears. Even as a young adult, we would, with his permission, reinstall the listening device and also take this with us if we stayed away from home (adjoining but separate hotel rooms etc.) On the two occasions he had tonic-clonic seizures in bed, the noise through the monitor woke us and so we were able to respond appropriately at the early stages of the seizure. Currently we are in a period where he has been seizure free for over 18 months and the balance of medication and lifestyle choices seem to be working, but we still have the ‘baby’ monitor at the ready if he has any signs of not being his ‘normal self’.
I wonder if any other parents who have used one of the epilepsy/medical linked monitors could share their experiences?