currently going through diagnosis

[masone22]

Hi all,

Just looking for some advice, my daughter is currently under investigation for epilepsy, we have had an EEG which showed seizure activity and currently awaiting an MRI scan, just wanting some advice with regards to what else to expect, are they the two main diagnostic tools? Will we be asked to have genetic testing? Quite anxious about it all.

Thanks

[Anonite]

Hi,

At the beginning my son had an eeg and MRI. He was 16 though when diagnosed. I believe the MRI is to rule out anything else that might be causing the seizures.

We didn’t have genetic testing but if your daughter is a baby and they suspect it might be a specific type of epilepsy then I think they might do genetic testing but I’m not 100% sure.

There is a new instant chat section on the epilepsy action website where they can help you with any questions that you might have I found it very good.

At the beginning once epilepsy was confirmed we were given medication to control the seizures it took about 6 months to find right dose.

It is very hard to get your head around but once everything settles down it does get a bit easier. How you are feeling is completely ok I don’t think people who have not experienced an epilepsy diagnosis understand actually how stressful it can be and as parents we just want the best for our children.

Hope all goes well for your daughter xx

[masone22 in reply to Anonite]

Thankyou for your response! She isn’t a baby so hoping they can give me some answers without lots of different testing, she has some serious hospital anxiety due to a previous bad admission so hoping to keep it all to an minimal which is probably a tough ask but just trying to make it as easy as possible for her! Thanks again

[Colealbi in reply to Anonite]

Hi just a bit of clarification an MRI is looking for Structural damage to the brain genetic, birth or injury !

An EEG is a recording of brain waves to a pre set collection of actions and responses

[Memyselfandi1]

Hi, you're doing great by asking questions.... from my long experience of Epilepsy I personally suggest you consider talking to a Epilepsy specialist nurse, which should be working alongside her Neurologist to get the best treatment or treatments to suit her version of Epilepsy ( varies in every person ). There are approximately 100 billion neurons in the brain hence the complexity and variables of treatment. The Epilepsy nurses will probably focus more on problematic factors she personally is faced ( a outlet for someone with Epilepsy is very helpful, stress is one of the main causes of seizures )

Also she may or yourself may be interested in MyEpilepsyTeam app, very interesting informative factual information aswell as supportive people from all walks of life with different variations ( which can be tailored to suit similar ages, medication,symptoms etc )

[masone22 in reply to Memyselfandi1]

Thank you so much for your reply, that’s all really informative and will definitely look at the app!

[Memyselfandi1]

You're so welcome, all the very best.... good luck,good health with everything.

[GillyA]

Hi, I’m so sorry to hear about your son, it must be extremely worrying for you. One of the challenges with epilepsy is that they often don’t find a cause. Many of the tests are used to confirm it’s presence rather than tell you why.

From that perspective the eeg will help the doctors decide which drugs to use, even if they don’t tell you why it’s happening. They may or may not do genetic or other blood tests. In my case they didn’t at the time of diagnosis (20+ years ago). My eeg and mri were clear and continued to be for 20 years, the eeg still is…

They did do blood tests 3 years ago after some further cerebral issue which showed on the mri this time around. They then found antibodies for an autoimmune condition which they think is the underlying cause of my epilepsy, but my consultant said that even now they probably wouldn’t do the particular test routinely.

The route to diagnosis and drug treatment isn’t always straightforward, but with the eeg they are on the way to helping your son. Wishing you all the best