to think we have had the worst xmas ever

[fattybumbum]

On Christmas Eve DS1 (aged 4) and I were returning from the local shops, walking happily through the snow when he suddenly let out two screams of (sounded like pain) and collapsed on the snow unconscious, with his eyes rolling back in his head and his arms twitching. A man walking past called an ambulance for us and wrapped his coat round DS until the ambulance arrived. He also kindly went to our house and told my DH where we were.

Anway, he was given the 'all clear' by A&E and sent home (thankfully) but we have been warned to watch out for further seizures. This means that we were on hyper alert today especially as he seemed a bit as if his head was lolling down and then jerking back up (IYSWIM) in a weird way. So that was our xmas day with a small baby to look after and not able to leave our son for one second. I have been crying off and on all day as I am worried sick about him.

By the way, the background info behind my story is that he had been having strange 'jerks' and eye rolling in his sleep since he was 18 weeks but has been given the all clear by 3 consultants (inc an epileptic specialist only 2 months ago). He has had an EEG, an ECG, an MRI and his urine/temp checked. No one can see anything wrong with him. Until yesterday I have not been quite so worried about the night seizures as he couldn't come to any harm in bed.

This latest episode paints everything in a totally different light. I am absolutely devestated. I am so worried about my gorgeous funny bright little boy. I am guessing that they will put him on meds.Please tell me everything is going to be ok. If anyone out there has a child with epilepsy, please tell me that it is possible to lead a normal life with this condition. I can't bear for anything to go wrong for him. I love him so much.

I don't know anything about epilepsy really, but just wanted to answer so you know people are reading and sympathising. DP had seizures when young, but grew out of them, if that is any help...

you poor poor thing! and your DS!

i have no words of comfort at all for you I am afraid because I know nothing about what your DS is going through.

but i do hope someone more sensible than me and more knowledgable than me will answer your post soon.

fattybumbum, please post in the SNs forum, too. i am sure that there would be people there who could advise you.

OK I'll put the post there too. Will copy and paste as I don't think I have the energy to write it all again. I'm feeling very drained right now.

Don't know much about epilepsy apart from I had a colleague whose son had fits like this, and he grew out of them and is fine now. But I imagine it's a very variable thing. Hope you manage to get a bit of help watching him until you get to a specialist.

No advice but much sympathy for you. I hope that you find out what is wrong, there might be someone on MN who can help.

All I can say is that I have a good friend with epilepsy and she absolutely leads a full and normal life.

Good luck.

Oh Poor you.

I have a DD aged 6 with epilepsy. She has never had a 'proper' seizure but has loads of weird absences where she blanks out. She was having so many she was missing loads of her school day and her education and social skills were suffering. It was awful. There is nothing in the family and she is otherwise healthy.

She went onto epilim and she hardly has any now although the meds do affect her moods and behaviour and she can be a little madam.

I agree, post on SN, there will be people more knowledgeable than I to assist you.

xxxx

Oh really feeling for you xx

My ds aged 4 had seizures from 13 months and it's devastating seeing them isnt it. My ds has now been seizure free for a year and off meds. He is very active and his seizures never stopped him doing anything at all - he has an older brother a year older and does and has always done everything he does.

The epilim /sodium valporate he was on was a very safe drug and the only side effect he had was it made him a little tired.

Hope he is ok, and you and your dh xx

Since you are asking, I do think YABalittleU, although I symathise. DD1 was diagnosed epileptic in January this year, at the age of 3. She is on Epilim, and had gone for months without a drop attack. But she had another 2 days ago, so we have had to up her dose. It is worrying & takes a long time to adjust to.

But there are people like my uncle, whose wife died last year & daughter died 4 days ago. 2 children don't have a mother so close to Christmas; or Trinity, who lost her DH this year, and I'd wager that they've got it much worse.

At least we can deal with our DC's new condition in time.

But do come to the SN board - it is a fantastic section, with huge knowledge and support

Take care of yourself, and let it sink in. I had almost started to wonder if dd had epilepsy afterall, so her latest drop attack just knoecked me for 6

Yup, wander over to the SEN boards. I am a 28yo mum of 3...who also happens to have epilepsy. (there you go, yes it is possible to have a normal life with epilepsy!). Also my 11yo DD has epilepsy. She has occasional TC's (not that often thankfully), frequent absence seizures, and nocturnal seizures. She is on Keppra atm, we are waiting for her dose to be raised. She does have some development delay, but that is also partly down to her other SEN (as well as the epilepsy). However, she IS in a mainstream school, and is starting to make improvements. Hope you are feeling better, and my best advice, is no matter how hard it is, don't wrap your DC in cotton wool, let him do as much as (is safe) everyone else his age. There really are very few things that you cannot do as a child with epilepsy, my DD went on her Y6 trip last yr, and was even able to do quad biking with a chaperone, she went abseiling and kayaking. .

YANBU of course, hope your all ok.

My dp had seizures as a child too, hes fine now, has been since he was 7!

Hello OP,

Just wanted to tell you about my cousin, she was 4 when our grandad died (she lived with him/my nan/and her parents in his house) and shortly after had her first epileptic seizure.

She had many more over that first year (if I'm remembering correctly) but then they got her meds right. She is now a 30 something mum of 1, happilly married, has a good career and can't remember the last time we were told she had a seizure (we live quite far away so don't see each other very often).

Hope your DS gets his meds sorted soon and you can learn to adapt to his condition.

Hope the rest of your Christmas is a good one :-)

That sounds very frightening, but epilepsy is often easily controlled with medication now.

I think tests only show epilepsy if a seizure occurs during the test.

I cannot imagine what you are going through,but at least now some form of controlling it can be looked at.

It has been 1 seizure. This does not mean he will get meds. My dd has had 6 or 7 seizures but she doesnt have epilepsy. She was diagnosed with reflex anoxic. Im not saying this is what ur ds has but not all seizures are epilepsy. And not all require meds. DD will grow out of hers by the time shes about 6 or 7 we hope.