# Epilepsy Support Group



## scottishgal89

Does anyone LO have it?
my little girl was diagnosed at the start of this year.
just looking for someone to talk to
:flower:


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## Lottie86

Hi, Findlay has epilepsy :flower:


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## Tegans Mama

Tegan's neurologist thinks she has a form of epilepsy which involves 'vacant episodes' where she just goes totally out of it and is unresponsive. Its not nearly as bad as your LO's, but if you need to talk you know where I am :hugs: xx


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## Lottie86

Just realised perhaps I should have said a bit more in my post, sorry :blush:

Findlay is 14 months old and has a variety of different types of generalised seizures including absence seizures, myoclonic seizures and tonic-clonic seizures. They think it is quite likely that his sudden going floppy moments he has are also a type of seizure (atonic). 

He has no pattern to his seizures at all and can have them any time of the day or night and we have been unable to figure out what triggers them. His brain showed epilepsy activity during his EEG despite the fact he didn't have a seizure during the test. His neurologist said something to us about the activity at the front of his brain although I wasn't really taking everything in.

What type(s) of seizures does your LO have? How old is she? Is she on any meds?


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## Marleysgirl

Sorry, only just seen your thread (was stalking Lottie & Findlay LOL). My boy Andrew has been diagnosed with Infantile Spasms (West's Syndrome), which is one of the forms of epilepsy that babies can get.

Around the middle of May, he suddenly started having clusters of spasms - they looked rather like colic or constipation crunches. He would spasm for 1 second, then release for 10 seconds, before repeating; generally the cluster would last for 2 minutes. This would happen ever 4-5 hours, generally after a feed. After a couple of days (to allow for constipation!), we took him to the walk-in GP who sent us to Children's A&E. He had an attack whilst we were waiting there, so we filmed it on my mobile for the doctors - and this was the best move we could have made. The Registrar took one look at the video and made an initial diagnosis of Infantile Spasms, admitting him to the hospital for monitoring.

This was a Saturday, and he had an EEG on the Monday, which showed modified hypsarrythmia - the trademark brainwave pattern for IS. He was started on very strong steroid medication on the Wednesday, and had his last cluster of spasms on the Friday, just before we took him home from hospital.

He had an EEG after two weeks which showed improvement, so he was slowly weaned off the strong steroids over another two weeks. We go back this Thursday (6 weeks) for a final EEG. He still has not had another spasm or cluster of spasms, but we have been told that it could come back at any time without warning and would need treatment again.

It turns out that Andrew's grumpiness (I had even moaned about it on here) was early signs of the IS. The steroid treatment made him ravenous and irritable, we are thankful that he showed such a good response and could come off it quickly. We now have a very happy, cheerful, smiling baby who has finally started babbling.


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## scottishgal89

marleysgirl- thats what my lo has. will pm you now :hugs:


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## Lottie86

Do any of you have an apnea monitor due to their epilepsy? 

I spoke to Findlay's development consultant about one as I was concerned that if he has a seizure overnight and we don't know about it and he doesn't start breathing again (he stops breathing and goes blue during them) we won't find out until the morning which is too late. 
She told us that apnea monitors aren't reliable for babies his size (and seizure alarms aren't reliable either) and to just use a baby monitor which is fine if I am awake to hear him make a strange noise at the start of a seizure but otherwise we won't know that he has had one. 
Findlay had a Respisense breathing monitor when he was younger so I am seriously looking at buying him a new one for peace of mind (the batteries died in his old one and aren't replaceable) but I just wondered if any of you had apnea monitors if your LO has a tendency to stop beathing and go blue during seizures.


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## Marleysgirl

I'm afraid I can't advise Lottie, because we managed to get Andrew through hospital and treated so quickly after the spasms started. He never had full-blown seizures and stopped breathing. 

But what I can tell you is that, when he was in hospital, the nurses insisted on him being on an apnoea monitor in the cot when I wasn't there, it connected to a pad stuck on his belly. So such monitors must work on 10m babies, and must be worthwhile, or they wouldn't have bothered.

ETA. Our hospital uses Graseby MR10 monitors, but these are expensive. I like the look of the Respisense monitor that clips onto the nappy!


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## scottishgal89

i was only offered a movement mat and didnt have time to get it. it wouldnt have alarmed if my lo had one anyway. personally i think they are too small at this age.
i freeked out about this for weeks and weeks, i honestly would sit up all night with her because she would wake up every 20mins and have one, she sleeps threw now but the thought of it terrifies me, i still check her a lot during the night but shes in her own room now
sorry not much help.

if i were you though, i'd get a breathing monitor. i considered it for a while


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## scottishgal89

Tegans Mama said:


> Tegan's neurologist thinks she has a form of epilepsy which involves 'vacant episodes' where she just goes totally out of it and is unresponsive. Its not nearly as bad as your LO's, but if you need to talk you know where I am :hugs: xx

thanks Lea.
how are things going for you guys?
i hope things are a bit better.
been thinking about you all :hugs:


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## scottishgal89

Lottie86 said:


> Just realised perhaps I should have said a bit more in my post, sorry :blush:
> 
> Findlay is 14 months old and has a variety of different types of generalised seizures including absence seizures, myoclonic seizures and tonic-clonic seizures. They think it is quite likely that his sudden going floppy moments he has are also a type of seizure (atonic).
> 
> He has no pattern to his seizures at all and can have them any time of the day or night and we have been unable to figure out what triggers them. His brain showed epilepsy activity during his EEG despite the fact he didn't have a seizure during the test. His neurologist said something to us about the activity at the front of his brain although I wasn't really taking everything in.
> 
> What type(s) of seizures does your LO have? How old is she? Is she on any meds?

my little one has infantile spasms,
her EEG pattern is abnormal at all times.
she has been on phenytoin, epilum, nitrazepam, vitamin b12, prednisolone, vigabatrin, acth daily steroid injections and is currently on topamax (nothing has normalised brain activity or stopped seizures yet)
lo is now 7months old and started taking seizures at 7weeks old.
originally she was diagnosed with myclonic epilepsy and had lots of different types of seizures all in a certain order at the same time. i cant remember what types exactly off the top of my head to be honest.

sorry i didnt get round to replying properly yesterday :flower:


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## MissBizz

My daughter was diagnosed with right temporal lobe [with a tendency to generalise] epilepsy this year. She also has a chromosomal defect. And various amounts of other things wrong. Gt Ormond Street said her chromosomal defects haven't been seen before and not in any medical journals. They think it's the reason for her learning disabilities but they can't be sure, part of me is wondering if this is why she now has epilepsy. 

It's scary to know she now has to take medication for that too. She has night time seizures. And because of this sleeps all the time. She goes to bed at 6.30, has a sleep at school in the day and on the school bus on the way home. She is 11. 

It is scary but you are not alone.


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## scottishgal89

are they looking into the cause of the epilepsy and running tests?
what medication is she on just now?
what kind of seizures does she have?

:flower:


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## MissBizz

scottishgal89 said:


> are they looking into the cause of the epilepsy and running tests?
> what medication is she on just now?
> what kind of seizures does she have?
> 
> :flower:

They have done all the tests. MRI and the light tests etc. They can't give me a reason why it has started. They saw nothing in her brain to explain why it started. 

She is on Tegretol. They have recently upped her dose. As she is still jerking at night. She hasn't had a Grand Mal Seizure as of yet, but they have told me it is likely it is going that way. She constantly jerks in her sleep her brain never switches off. The other day I did catch her doing this weird thing when watching tele. Her head was moving weird and her hands were shaking and she was pulling a face. After I asked her what she was doing and she didn't know. 

What medication is yours on hun?


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## scottishgal89

theres not a cause for my lo's epilepsy either
just now she is on topamax
they've already tried- phenytoin, epilum, nitrazepam, vitamin b12, prednisolone, vigabatrin and acth daily steroid injections. but none of them worked
looking into the ketogenic diet now too


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## MissBizz

I hope they manage to find a medication that works. It's crazy how many there are out there.


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## Lottie86

I have been speaking with other Mum's (mainly in the states) of children with chromosome abnormalities and a lot of them have epilepsy. Apparently the docs think in children with chromosome issues it is due to correct dna coding for correct brain development where as having too much/too little dna (due to deletion or duplication) can cause the brain to develop slightly differently.


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## scottishgal89

i talk to two people in the US who have a kid with IS and another person in Scotland who's little boy has epilepsy, they dont know what type or how to control it either.

MissBizz- yeah its crazy how many there are. after we have tried this one and another one as well as the ketogenic diet then it will be a case of pick one any one because all of the first and second line treatments for IS will have been tried so just try anything to see if theres any effect


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## Tegans Mama

scottishgal89 said:


> thanks Lea.
> how are things going for you guys?
> i hope things are a bit better.
> been thinking about you all :hugs:

Hey hun
We're doing alright thanks, plodding on! Have appointments coming out of our behinds still (3-4 a week) but we're ok. Tegan herself is doing pretty well!
How is your LO? x


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## scottishgal89

Tegans Mama said:


> scottishgal89 said:
> 
> 
> thanks Lea.
> how are things going for you guys?
> i hope things are a bit better.
> been thinking about you all :hugs:
> 
> Hey hun
> We're doing alright thanks, plodding on! Have appointments coming out of our behinds still (3-4 a week) but we're ok. Tegan herself is doing pretty well!
> How is your LO? xClick to expand...

Things aren't great again here, the docs thought the seizures had stopped and didnt believe me when i said she was still having them. It took my hv phoning them after a month and a half till they did something about it :grr:
shes on a diff med now which doesnt seem to be working. just makes her really sedated and she wont eat which isnt good. she'd already lost a lot of weight (5lbs) after coming off of the steroid injections so im a bit worried.
she had an mri last monday, hoping for the result tomorrow and has an eeg on monday to check for improvement
xx


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## mum2beagain

Lottie86 said:


> Do any of you have an apnea monitor due to their epilepsy?
> 
> I spoke to Findlay's development consultant about one as I was concerned that if he has a seizure overnight and we don't know about it and he doesn't start breathing again (he stops breathing and goes blue during them) we won't find out until the morning which is too late.
> She told us that apnea monitors aren't reliable for babies his size (and seizure alarms aren't reliable either) and to just use a baby monitor which is fine if I am awake to hear him make a strange noise at the start of a seizure but otherwise we won't know that he has had one.
> Findlay had a Respisense breathing monitor when he was younger so I am seriously looking at buying him a new one for peace of mind (the batteries died in his old one and aren't replaceable) but I just wondered if any of you had apnea monitors if your LO has a tendency to stop beathing and go blue during seizures.

hi hun my sil s little girl is 2 she was born with brain damage and she has severe epilepsy she has an apnea monitor under her sheet in the cot its preety good only ever gine off during a seziure never just gine off on it own owever the hops and hv have told sil she has to stop using it now as they want it bk my sil is so reliant in shes very nervouse about nt having it any more xx


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## scottishgal89

mum2beagain said:


> Lottie86 said:
> 
> 
> Do any of you have an apnea monitor due to their epilepsy?
> 
> I spoke to Findlay's development consultant about one as I was concerned that if he has a seizure overnight and we don't know about it and he doesn't start breathing again (he stops breathing and goes blue during them) we won't find out until the morning which is too late.
> She told us that apnea monitors aren't reliable for babies his size (and seizure alarms aren't reliable either) and to just use a baby monitor which is fine if I am awake to hear him make a strange noise at the start of a seizure but otherwise we won't know that he has had one.
> Findlay had a Respisense breathing monitor when he was younger so I am seriously looking at buying him a new one for peace of mind (the batteries died in his old one and aren't replaceable) but I just wondered if any of you had apnea monitors if your LO has a tendency to stop beathing and go blue during seizures.
> 
> hi hun my sil s little girl is 2 she was born with brain damage and she has severe epilepsy she has an apnea monitor under her sheet in the cot its preety good only ever gine off during a seziure never just gine off on it own owever the hops and hv have told sil she has to stop using it now as they want it bk my sil is so reliant in shes very nervouse about nt having it any more xxClick to expand...

why do they want it back? :(


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## TattiesMum

I'm sorry that you are all having to cope with this :( :hugs:

Please don't take this the wrong way, as I am certainly not meaning to trivialise :( But I have a dog with epilepsy and, because so little medication is available for animals with it we are forced to really work hard at figuring out triggers and I wondered if some of *our * known triggers might be of any help to you guys (after all the epilepsy is still the same neurological condition) :hugs:


Our main one is electrical signals .... TV is the worst but radio, the computer and kitchen appliances can all trigger siezures.

Loud noises - particularly repetitive ones like road drills, children screaming.

Fear/Stress/Anxiety

Bright lights - particularly fluorescent


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## mum2beagain

~daisychain~ said:


> mum2beagain said:
> 
> 
> 
> 
> 
> Lottie86 said:
> 
> 
> Do any of you have an apnea monitor due to their epilepsy?
> 
> I spoke to Findlay's development consultant about one as I was concerned that if he has a seizure overnight and we don't know about it and he doesn't start breathing again (he stops breathing and goes blue during them) we won't find out until the morning which is too late.
> She told us that apnea monitors aren't reliable for babies his size (and seizure alarms aren't reliable either) and to just use a baby monitor which is fine if I am awake to hear him make a strange noise at the start of a seizure but otherwise we won't know that he has had one.
> Findlay had a Respisense breathing monitor when he was younger so I am seriously looking at buying him a new one for peace of mind (the batteries died in his old one and aren't replaceable) but I just wondered if any of you had apnea monitors if your LO has a tendency to stop beathing and go blue during seizures.
> 
> hi hun my sil s little girl is 2 she was born with brain damage and she has severe epilepsy she has an apnea monitor under her sheet in the cot its preety good only ever gine off during a seziure never just gine off on it own owever the hops and hv have told sil she has to stop using it now as they want it bk my sil is so reliant in shes very nervouse about nt having it any more xxClick to expand...
> 
> why do they want it back? :(Click to expand...

im not exactly sure i think because they feel she no longer needs it although my sil has become dependant on it bless her


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## scottishgal89

surely she can request to keep it.
does her daughter have seizures all night?
if so, then it could be unsafe to take the monitor away


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## Marleysgirl

Just an update for the thread - Andrew's EEG today showed marked improvement in the hypsarrythmia, so they have effectively signed him off from being monitored. I am simply to watch for any signs of the spasms returning or other seizures developing.

I am aware that we have had a really lucky escape this time, and that many of you are going through huge problems with epilepsy. I send hugs to you all :hug:


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## scottishgal89

:hugs:
im so pleased for you.
was the EEG completely normal or just getting there?
is he completely weaned off the prednisolone now?


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## Lottie86

That is fantastic news about Andrew :thumbup: :happydance::happydance::happydance:


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## Marleysgirl

I think the EEG is "getting there" rather than gone completely, but they didn't exactly say. He's completely off the Prednisolone - he had two weeks at full dose, and then two weeks of reducing dose to wean off. 

I am to phone them should the spasms start up again, and I've got some leftover Pred in case they want to tell me to re-start the same medication.


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## Jemma_x

Im so glad andrew EEG showed improvement.

I have epilepsy myself and Connor has had 3 seizures since he was born, connor hasnt had an EEG or MRI because of him only having 3 but if he has anymore thats the first thing there going to do. How are all your babies doing?


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## mum2beagain

~daisychain~ said:


> surely she can request to keep it.
> does her daughter have seizures all night?
> if so, then it could be unsafe to take the monitor away

she has seizures at all different times during th day and night but her apnea hasnt gone off for a few months now so the health visiotr ans specialist feel its time to stop using it they have told her if she wants to keep it she will need to buy her own she has explained to them that she wouldnt mind giving it bk but that she feels she needs to wean herself off it gradually as she is reliant on it she was told that it would be unlikely jasmin would survive past 15months she was 2 in feb and my sil is soo scared of losing her


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## scottishgal89

yeah its horrible when they put odds against them.
i try not to think about them about my daughter because it doesnt look good.
are they ok with her weaning herself off of it then?


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## scottishgal89

Has anyones little one been on or on Topiramate just now?


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