talkhealth forums

What sort of things do they ask when you are referred for diagnosis? My 7 year old son has been referred to an epilepsy clinic

Hi Elaine, they will ask you what symptoms have you seen, staring, twitching, falling to the floor, shaking. What time of day morning, night time. What can start them off flashing lights. How long does it last seconds or minutes. If you can record one on camera or mobile phone easier to show consultant. Hope this helps take care from Jelly Syrup

Thank you for getting back to me. It really helps

Hi elainecookie

It can be confusing when you are waiting for a diagnosis but you might find this information from our website useful: tinyurl.com/mk74zrw

Hope this helps
Kathy

Dear Elaine,
as has already been said - you'll be asked about the symptoms/suspected seizures - including the circumstances, if there are any warning symptoms (they'll ask you son this also), what happens during the episodes, if there are any triggers, how he is afterwards, frequency etc. We usually also ask about how you were during your pregnancy with him, how the birth and delivery was, if he walked and talked at around the usual age, and how he is generally. Also about other things which it is important to know about which might be clues as to the cause/type of epilepsy if it is confirmed - such as any history of febrile convulsions (seizures in toddlers with high temperatures), previous head injuries, any other serious illnesses.

The diagnosis is made primarily on the history of the episodes and witness accounts and as Jelly Syrup has said if you are able to get a video of episodes this is incredibly helpful to the health care team. The other background information make up other pieces of the "jigsaw" - i.e. putting together a complete picture from which the doctor can the decide on the diagnosis and investigation plan.

Be aware, sometimes it isn't easy - in most cases doctors experienced in this area can be very confident about the diagnosis at the first appointment - and tell you it is/isn't epilepsy - but if the picture doesn't quite add up, it is generally better to say you aren't sure and need to have more information (more witness accounts, home video, sometimes investigations) - before you can make a diagnosis. Although doctors don't like to say they don't know - this is one situation where it is better to say so if you are unsure, rather than giving false reassurance, or starting someone on antiepileptic treatment they don't need.

Hopefully they will also ask if you have any specific concerns/worries, and a bit about his school/family life - particularly if he does have epilepsy it is important for the team managing him to also understand how this might fit in with his social and family life so they can provide the right support.

It is a good idea if you do have any specific questions to write them down before you go, as it's easy to forget in the "heat of the moment", but I realise that is difficult until you know what the diagnosis is.
Hope that helps, good luck
Hannah

Thank you so much for your advise on this. We still have a couple of weeks to wait for his appointment, so I was getting a little anxious as to what to expect. Thank you all again Elaine

Hi start keeping a daily diary & ask your child questions too so they are involved, on how they feel as he might get frustrated when you are asked the questions. Good luck for the appointment, take care from Jelly Syrup

Hi Elaine

Also think about bringing someone else with you that's seen your son's seizures. It can be difficult to remember everything you've observed in the heat of the moment, and often some else's perspective is really helpful. Additionally, they can help remember what the doctor says to you - most people forget at least half of what is said when they go to the doctor.

Remember, its not a test of your memory, or an exam, so you don't have to know the answers to all of the questions you're asked. Its much better to say you're not sure or can't remember if you can't answer. And don't feel afraid about asking the doctor to clarify what they mean by the question - sometimes we don't always ask question as clearly as we'd like.