'Hello, I'm new here' - RAS 14 month old recent diagnosis - should we insist on EEG or other tests rather than accepting the diagnosis

[Karen-Harris]

My granddaughter has recently been diagnosed with RAS by a Paediatrician at Poole Hospital. When we saw him she had had four blackouts spanning the course of a few months, and they had all been triggered by sudden pain from falling awkwardly or bumping herself - the first one was very frightening, she went blue around the mouth and her feet were blue. Because we didn't know what was happening I started CPR - but as soon as I blew in her mouth she woke immediately and started crying. She cries for a good 5 minutes afterwards and gets really tired. Since then she has had two episodes that have had no pain / shock / fright trigger. She has had another one this week, which started with her just crying as we were leaving the house to go home. Nearly all of her episodes are in the afternoon tea time, and have been at her home.

From a lot of literature I have read it does imply that you should insist on an EEG or other tests to make a firm diagnosis - my daughter has got another appointment to see the Consultant at the end of April - please could anyone else tell me if they were given the tests, or are they only done if the child is having daily episodes? My daughter is worried that this could be the start of epilepsy, and I suppose the tests may rule that condition out. I would even be happy to pay to have them done if necessary. If anyone else could tell me what their experience of diagnosis was that would be really helpful. Thank you.

[Samster2008]

Morning Karen just read your post which sounded like a carbon copy of our son when he was 14 months old. We finally got our RAS diagnosis a couple of years ago when he was 7 from the epilepsy specialist which we were sent too after an eeg and mri and a test i can't recall the name of where they use strobe lightning and the brain response is looked at. I got the impression that this was all done because the paedtricion originally assumed it was eplilepsy rather than to rule everything else out. I'm sure someone from stars will reply properly i Just wanted to say hi. Thanks Steph

[Karen-Harris in reply to Samster2008]

Thank you for making contact - it is so difficult to just accept any diagnosis I think without tests isn't it - and all at the same time you feel you don't want to be pushy but you also don't want to go down the wrong path of treatment or feel like you should be doing more - I think once we get some tests done we will all feel happier that it's not epilepsy - if the consultant will arrange some for us that is as he said he didn't think we needed any - it's such a terrible thing to witness and deal with - how is your son now? Karen

[Samster2008 in reply to Karen-Harris]

Hi Karen..Hopefully he will listen to you and your concerns..was thinking after i replied the other day the thing they kept asking was have i recorded it for them to view so might be worth trying to record it for them i know it is a really hard thing to mentally do when they having a seizure...Sam is very much a boisterous 9 year old now who still has RAS it definitely gets easier the bigger they get but still not pleasant to witness and obviously he is now aware that he has it but seems to accept it..Steph