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

 

[Lottie86]

Hi, Findlay has epilepsy

 

[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 xx

 

[Lottie86]

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

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?

 

[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.

 

[scottishgal89]

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

 

[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.

 

[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!

 

[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

 

[scottishgal89]

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 xx

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

 

[scottishgal89]

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

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

 

[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.

 

[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?

 

[MissBizz]

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?

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?

 

[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

 

[MissBizz]

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

 

[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.

 

[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

 

[Tegans Mama]

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

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

 

[scottishgal89]

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

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

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
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