My grandson (who will be 4 in Feb) was diagnosed with epilepsy a couple of years ago due to the fact he was having fits. He was back in hospital this week (more fits). It's not epilepsy at all. Apparently his heart stops beating. After a short while his body decides it shouldn't be doing that and 'jump starts' itself, hence the fits. How the h?!/ do you live with a problem like that? I'm still waiting to speak properly to my son to see what's going to happen next. I mean, will he need an operation or something? He's such a happy, hyper child normally. Very typical of a boy his age, until his 'fits'.

sorry about your grandson take care

Sorry to hear this. Poor boy - and of course all of you. I'll keep my fingers crossed that his heart condition will be easier to cure than epilepsy would have been.

Let us know how he gets on.

I'm just wondering if they will have to give him a pacemaker :( I know it would make me sleep easier knowing that he won't slip away in his sleep, but don't know if this is the right thing for his condition. I've tried phoning my son but his phone is switched off. It took us a while to get used to the idea of epilepsy as no-one on our side of the family had it. Don't know about his mum's family. Now we are having to reajust our thinking. Still, he's a great kid, if a little cheeky at times, like most of the time :D

What a shock for everybody! I hope the doctors spend time with your son's family explaining how people live with this condition and what the medics can do to fix the situation. Love and best wishes.

A friends child has a similar condition which he is slowly growing out of, do you know the name of the condition? She works for a charity that helps people with it and families. If it isn't the same there is more than likely a support group that can help them

All the very best

Hayley

Sounds the same as my daughter.
The correct name for it is RAS Reflex Anoxic Seizure, commonly misdiagnosed as epilepsy.
RAS is generally brought on by a sudden loud noise, a fright or pain.
Here is a website you might like to have a look at:
http://www.stars.org.uk/
It is very distressing to watch but thankfully it usually happens less often as they get older.
If I can help you in any way please let me know.
Regards,
Linda

This board is wonderful! With such a large membership, nobody is ever alone in their predicament. The support is terrific.
:)

Thats just the support group I was thinking of !! :)

Thanks everyone. I'm still trying to speak to my son - he's probably forgotten to switch his phone back on, typical.

I'm going to check the website Linda. Thanks.

Edited to add: Have just spoken to my son. It sounds very much like my grandson has RAS. He hasn't been given a name yet, but they have an appointment to see the specialists at Ninewells Hospital soon.

Thanks once again for the info. A much worried gran. :)

Sorry to hear that about Sean, linda. Keep us informed. its amazing what they can do these days. I bet it doesn't put him up nor down and he is a happy typical 4 year old. might see you at the ringcraft.
nicky

I'm very sorry to hear about the little guy. I do hope they can help him :(
Sending all good wishes and prayers your way, poor little guy

Hi Nicky. Might be there next week, when Chloe is better :D

Still not 100% sure about her yet.

Sean is still a little sh*t He will still be the typical boy as I don't believe in mollycoddling kids and brought up my lot to live life, not hide from it (though I sometimes wonder where I went wrong with Jenni)

Hi Linda. How is Chloe, i take it she didn't have any pups. Let me know.
Any further forward with Sean???

Lindylou
I have sent you an email....it is URGENT !!! What your grandson has sounds very similar to a condition my son has. Long QT Syndrome. It is potentially fatal, and extremely rare. I lost my son one night because of this condition....but he was brought back by my partner. It is often misdiagnosed as epilepsy. Please read the mail,and look into the links, or contact me. I can give you my phone number if you like.
Sorry to frighten you, but this condition is so rare that many doctors still aren't up to date with it.
I know this through months and months of research.
When my son was taken to our local hosital after he went into cardiac arrest, they wanted to send him home 2 days later, saying it was just one of those things..."he's just had a seizure." Luckily for us, a specialist from the Freeman Hospital saw my sons ECG, recognised the signs of LQTS, and sent us there immediately. A few hours later he had his diagnosis. This diagnosis can now help keep him alive. Without this diagnosis..............
We've all heard about the fit and healthy athlete who suddenly died without any warning....Sudden Adult Death Syndrome (SADS). This is the case with Long QT Syndrome.

wouldn't panic yet.
although LQT has similarities to RAS, RAS is usually a clear diagnosis once the docs recognize the signs.
The problem with a parent describing their child in a seizure is usually because they are panicing they do not give a clear picture to the docs of what is happening and that is why it is sometimes confused with epilepsy.
Generally RAS is triggered by something quite specific like a loud noise or sudden pain and this precedes the seizure.
There are various tests (tilt test, occular compression) that will be able to be done to give a definite diagnosis.
Long QT although similar type symptoms to RAS is different altogether. It comes under the same heading of cardiac arrythmia but can easily be tested for by doing a treadmill test.
Hope this helps.
regards,
Linda

I've just gone in and read your link Linda....it's all very similar to LQT.
It's not my intention to panic anyone unnecessarily, but to raise awareness of something that is a severe condition.
The symptoms and tests appear to be similar to those for LQT, and it made very interesting reading.
I get soo worked up about this condition, as it can strike without warning, but also with the same triggers as RAS....it's something I feel so strongly about, and have done nothing but reseach since April.

QOOTE from LINK "Unfortunately, because of the symptoms, it is known that RAS is often mis-diagnosed as temper tantrums, breath holding or as epilepsy"
Years ago my son had an ECC, because his seizure's usually happened after he had gotten worked up, after being told off. The tests came back clear, so the doc put it down to temper tantrums, and said he'd grow out of it. Nothing more to worry about, I thought.
One more mini seizure when he was 9, then when he was 10, that was it. It happened out of the blue, whilst he slept in my bed.
You're right about the parents panicking, when describing what happened.......I went to pieces, but my partner held everything together. He was, and still is my rock.
It's just all so very worrying with these cardiac arrythmia's .........

stephanie,
I didn't intend to imply you were panicing anyone, sorry if I offended you.
I know the anguish of watching your child in a seizure and not knowing what the cause is.
My daughter was diagnosed with epilepsy when she was a baby only to have the diagnosis changed to RAS when she was 7 years old. She is now almost 13.
Anyway after having no medication since the age of 7, docs have now decided that although RAS was a true diagnosis for her she also has a rare type of epilepsy also.
When she was checked for the RAS at 7 I was aware of LQT and also requested that she was checked for that. Thankfully for her that wasn't the case.
regards,
Linda

Linda, no, you never offended me. But I DO think now I went overboard in the warnings. I couldn't help it..sorry Linylou.
With my son, when he had his first full blown arrest, it was whilst he was sleeping. So needless to say, I still wake many times in the night to check he's still breathing. There are many different types of LQT depending on which gene caused it, and because my sons arrest happened whilst sleeping, it looks like its LQT 3.....but then again, until we get his genetic tests, we won't know for sure.
With LQT3 tho, like I said, it's occurs whilst sleeping.....so every night, I kiss him goodnight, and then it's always in my mind..."will this be his last night?" Because I wake so much in the night, I'm constantly tired during the day, nerves mostly on edge. Days are fine for us tho', but it's just the nights that get me.
I had no support from my family whatsoever, and one sister even said to me that she thought I was exagerrating about my son "dying". My family even fell out with my as they "didn't like the way I handledit all". Until this happened, I would never even say that "D" word in the same sentance with anything to do with my boys.
Lindylou, you're not alone....isn't it strange the places where you meet people in the same boat as yourself?
Steph xx

It is always a worry when the little ones are ill especially with something like that is not as clear cut as some illnesses.

I do hope they get to the bottom of this for the little ones sake.

Lucy
xx

Thanks Steph and Linda. I've read the links pages and it does sound more like RAS than LQTS but I've passed the info on to my son and he will let the specialist know. The last thing we want to do is wrap him up in cotton wool (grandson, not son :D ). Will keep you all informed.

It's good to know there are people out there who care, even if it's because you've been there, done that. I don't feel as if we're the only ones going through it.