Epilepsy frightened

[Theodoreb]

DD2 had a seizure back in July lasting 30 minutes she was in rescuss over a hour and being honest experience was so frightening. Well since then she been having what may possibly be mini seizures it follows a strict pattern 20 minutes behavior disturbance followed by 10 minutes zoning out completely unresponsive then ten minutes of spasms (her legs and arms twitch uncontrollably) then a further ten minutes of zoning out then she is quite clumsy and disoriented.

We had results of her EEG today apparently she had unspecified abnormal brain activity and anomalies. I was asked to keep a close eye and record any episodes if possible. I have 7.5mg madazolam to give to her if a seizure lasts more than five minutes but being honest after seeing that seizure I'm so frightened by the fact that these may become a normal part of life I don't ever want it to happen again. Very frightened and anxious.

How old is your daughter?
The next steps might be to ask for an mri and also bloods etc to be tested for the rarer forms of epilepsy like Dravets. Medication to stop seizures from occurring maybe trialled with your daughter depending on age.
Also they can now see if your daughter has specific epilepsy genes related to some forms of epilepsy which can provide an insight through her bloods.

My son also had a seizure last year in August and it’s the most frightening thing In the world. We were the same, long amount in resus and blue lights flashing all the way.

The best way to help yourself with being frightened is to arm yourself with asking for as many tests as they can give so you find you’re on a path that will either result in more informative diagnosis and/or medication to reduce seizure attacks.

Holding your hand.
I know it’s a tough time. But keep asking your consultant for more information. The tests are being developed all the time now at lightening speed with regards to epilepsy and new medications coming out all the time.

@Lesley25 Dd is 8 and they were first hoping it was a febrile temperature seizure but said as she was too old they wanted me to see specialist.

When I saw the specialist I told him about the episodes of faze iv out and twitching and he decided to do a EEG. I will definitely ask for more tests I'm just frightened of the thought that she will have another one and the fact that there was very little warning signs.

@Lesley25 I'm also very sorry you experienced the same it's so frightening and I've had one or two people I've tried to talk to say stuff like it's no big deal when yes it is a big deal it was very frightening and the most frightening part was when the seizure had stopped I was talking to DD2 as they were all doing tests and she wasn't recognizing me at all for a while which made me frightened my little girl was gone.

There were v little warning signs for me too. The only one was we were outside 2 minutes before and the sun was so bright whilst my son was Playing with bubbles which again catches the light and flickers in an unusual way, but he’s 11 and there were no other signs.

Once armed with the facts and the results it will get easier to digest, for us- the tests came back with nothing, mri fine, bloods EEG all normal.
Ive heard the EEG isn’t A very accurate test because it’s useful only when a seizures In Progress.
We had a sleep EEG, regular EEG, MRI, bloods, and genome testing for epilepsy genes. Ask for the same.
God forbid if it happens again I’ve had to tell
Myself not to scream like a banshee, lie son in the recovery position and start timing straight away and call for an ambulance.
My son is non verbal but he has a few words and when he came round he said “headache” And my worry was That he would go through a period of regression and lose skills or the few words he knows. He did for a few days but there were no long term issues.

@Lesley25 just curious does your DS have ASD? sorry if I'm being nosey just DD1 has ASD and wondering if there is a connection.

DD2 has a normal EEG and it took about a hour and they were talking to her when they did the flashing lights DD2 didn't have a seizure but she started zoning out which I noticed so thinking that is what was picked up, just want answers soon tbh and want to get a treatment program started can I ask does your DS have a mood disturbance before zoning out?

My son does have severe asd.
My son doesn’t really zone out - the seizure he had was a total clonic seizure arms legs all jerking and jaw locked shut, eyes open but no control. Basically a seizure that you would see someone with epilepsy have.

My adult daughter has Epilepsy as well as CP. I completely understand your fears, it is very scary. Knowing what to do in the event of a seizure really helps and on the couple of occasions where I’ve had to call for an ambulance, the paramedics have been wonderful. Over the years, I have become less stressed about it but it is upsetting. Sending big hugs your way. 💐

Apart from timing the seizure, laying the child in the recovery position and calling an ambulance - is there anything else we as parents can do in the event our child does have a seizure?

@funmummy48 thank you for sharing your experience, must be hard to cope with mixed with cp as well.

@Lesley25 my daughter also had a full blown seizure it lasted about 20- 30 minutes whole body convulsing eyes rolling back in July.

But daily she has these symptoms were she blacks out and cannot hear you when you speak to her and sometimes just her legs twitch in addition to being unresponsive.

We’ve learned over time to spot the warning signs of a seizure & to be prepared or even to head one off. When my daughter is having one, I’ll sit by her side and say soothing things as well as gently stroking her hair and face. We also talked about it when she was little and compared it to slightly faulty wiring which she found funny. My youngest daughter grew up watching it so it’s never been a big deal to her. When she was about 2, I called for an ambulance as her sister was having a prolonged seizure. All the time I was on the phone, the little one was stroking her sister’s hair and saying “it’s okay, it’s okay” It was so sweet!

@funmummy48 you know the mini episodes DD2 is having where she becomes vacant unresponsive and her legs twitch could these be early warning signs of a full seizure?

@Theodoreb how about you start a new thread early warning signs of a seizure when your child can’t tell you” there maybe lots of useful insights from lots of parents

@Theodoreb yes, these could be warnings. Keep notes to see if there’s a pattern. My daughter’s early warning is a tingling tongue and sometimes, if she lies down for a rest, it goes away without developing further.

They are likely to be seizures in themselves, which may stop at that; or they could turn into what you call a full seizure - which I suspect is a tonic clonic.

Epilepsy Action probably has on its website, the descriptions of all the different types of seizures. I suggest you read them, although it’s not always easy to classify seizures, wiithout them having done video telemetry. (An eeg for 24 or 48 hours, while under video filming)

For instance, where a person just goes blank for seconds might be an absence. It’s a minor seizure.

Another type of seizure is called myoclonic, which can be just a jerk of say an arm or leg?

I suggest next time you see a neurologist, to get the results of the EEG, ask for an emergency protocol, if you haven’t got one already - so that you have a set of instructions on when to use midazolam and/or call 999.

A seizure can affect any part of the brain, so it can produce anything we experience - including a change of mood, visual or auditory hallucinations..... Gelastic seizures cause laughing for no apparent reason. DD for instance can get aggressive before, during or after a seizure - but she rarely has tonic clonics; she mainly has focal seizures. I believe people are unconscious during tonic clonics, whereas it’s only impaired consciousness during a focal seizure (or absences).

Here we are:

www.epilepsy.org.uk/info/seizures-explained

They also go on to explain about triggers - as pp have said. While epilepsy usually needs drugs for treatment, it won’t be controlled by lifestyle changes alone, living in a routine with regular mealtimes, plenty of sleep, taking the medication at a regular time, exercise, etc can reduce the triggers for seizures. Triggers may include hunger, tiredness, stress, boredom, being too hot/cold, pain, the menstrual cycle, and failure to take the medication properly.

If you keep a diary of the seizures, it may help you identify the triggers for DD.

As one consultant said to me:

“DD needs to live a normal life. Everything is a risk for everybody, and it’s more of a risk for DD, but don’t wrap her in cotton wool - it will only cause behaviour problems.”

@MontStMichel your post was very informative and I thank you I will certainly need to do more research as I think it will obviously be better for DD2 and I think it will ease my anxiety if I am more informed.

We and the school have had a risk assessment done and what protocols to follow. School and myself have been instructed to call 999 as soon as Dd enters a full seizure as opposed to waiting 5 minutes, (dds head teacher has a DS with epilepsy and was saying no ambulance needs to be called for five minutes, however her epilepsy nurse instructed school owing to severity of DD2 first seizure ambulance is to be called straight away). Then at 5 minutes (myself my mum and two members of staff in school) have been trained to administer madazolam.

I personally want her on medication as I see symptoms of epilepsy daily such as twitching, mood disturbances which can if not acted upon quickly with a quiet place to calm down in, turn into DD2 blanking out and having leg spasms then being very clumsy. I feel DD2 life is impacted regularly by this and feel it would improve her life to be on some sort of treatment. Just not sure neurologist is going to agree with Dd being so young.

I can’t believe a neurologist would consider 8 years old too young for medication, especially for prolonged seizures like you have described!

That's re assuring we haven't discussed medication yet I plan to ask at next appointment I was just anxious that she may be too young.

My daughter started medication after her very first seizure which she had at the age of 8.

@funmummy48 very reassuring thank you I really would be happier if she was on medication.

Both my DC had childhood non-febrile seizures - they think they were both just born with a low seizure threshold which righted itself over time. They generally proceeded an illness (but were not linked to temperature).

DD had 18 seizures in 24 hours at 6 months and they put her on medication straight away, so your DD is definitely not too young.

DS also had seizures from 6 months but his were spaced out so he was never medicated.

I much preferred it when DD was because with DS I was constantly on tenterhooks afraid of it happening again, the medication took that fear away with DD.

We also had support from an epilepsy nurse who went into nursery and talked to the staff about what to to - so it's worth finding out what support is offered by your hospital team.

Ds has had several massive seizures (lasting up to an hour), nothing particularly turned up in the tests (he also has severe developmental delay and adhd). He has been on sodium valproate since he was about 4 with no apparent ill effects and it does seem to really reduce the number of seizures. I know it is is so awful to watch your child go through a seizure, I was almost in tears every time I saw an ambulance for a long time after!