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Friendly advice please [smile]

(6 Posts)
simbra120110 Tue 04-Mar-14 19:25:17

Hi girls,
My daughter is about to turn 1 years old on the 27th march although her developmental age is of a 2 month old, she's been diagnosed with epilepsy and also has another disorder which doctors still don't about, she is constantly having tests done and I was just wondering if anyone is or has been through the same? I'm only 20 years old and feel quite alone with it.
Any comments would be welcome!
Thanks smile

homework Tue 04-Mar-14 21:03:41

Welcome , not been though this myself but your doing well coping with so much at such a young age.
Hope you find answers , remember to try and take a little time for yourself , otherwise whatever age you are it can all become too much.
Hopefully someone with more experience of epilepsy will be along soon to offer you more support.

youarewinning Wed 05-Mar-14 17:22:35

Hi. Another who hasn't been through it but didn't want to ignore.
Have you heard of SWAN? (Syndromes without a name?) I've header other parents say it's been a lifeline as there are many parents there who have experienced or are experiencing what you and your DD are.

Have you got any support in RL? Pop over to the goose and Carrot in SN chat - there are lots of us there with children with differing types of special ends and disability - it's a great place to be with parents who understand.

StarlightMcKingsThree Thu 06-Mar-14 09:48:55

Hi Simbra,

What tests is she having done? You could ask, and then ask what they are trying to rule out!?

I'm afraid I'm a bit of a first hand expert of epilepsy being a person living with myself sad

There are about 40 different types of epilepsy and many go hand in hand with syndromes and learning disabilities.

The best thing you can do is record her seizure i.e video them. Make a note of their duration and time of day or night. This will help doctors identify the type of seizure immensely.

Her doctors may do a EEG records electrical activity. Useful to confirm a diagnosis if seizure activity happens whilst EEG is being carried out but not foul proof as seizure activity doesn't come to order, even with a sleep deprived EEG.

MRI scan takes pictures of the brain and for an enhanced MRI a dye is injected to show up blood vessels as well. For a very young child they are usually sedated because the MRI machine is extremely noisy.

Video telemetry is where a person is attached to an EEG for days and videoed in the hope of capturing a seizure. I've never had to go through this BTW.

For support join Epilepsy Action. You will receive a magazine every 3 months. There is a helpline and lots of information available. Epilepsy Action also run a website called forum4e. You don't need to be a member EA to join. There are many parents of children with epilepsy on there, who will gladly offer support and share their experiences. You will not feel alone smile

zzzzz Fri 07-Mar-14 05:21:27

Hi simbra my dd3 is 6 and had her first seizures at about 10/11 months, it's grim isn't it? Mine has pretty much normal level development now but was sort of stuck at 10mo the for ages. She had a very long crawling to nursery stage. Her older brother also has neurological problems/ASD/language disorder.

Are her seizures controlled yet? How did it all start? Mine got a sore throat and out of the blue we were in another life. Do you have monitors for nighttime? Are your parents/partner supportive?

I'm sorry I didn't answer sooner. This week I only have my phone so my mntting is much harder!

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