What do you think?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Courtneysmum

Courtneysmum

New
Messages
52
Reaction score
0
Points
0
Hi everyone:)

I am new here. I have been reading through forums trying to find answers to what my daughter has been going through.
I have an 8 year old daughter who I think has epilepsy.
We have just returned from a week at Princess Margaret Hospital in Perth.

Looking back It probably started on the 13th of August when my daughter was seemingly ignoring me. I got quite cross at her actually. I was asking her to do something to get ready for school & she was just staring at me blankly. I kept repeating myself & eventually she said she never heard me. And then this terrible mood swing that was completely out of character for her. so much so I was wondering what the heck was going on.
A couple of days later she informed me that that her vision had been blurry/double for a couple of days. We took her to the dr who reffered her to an optomarist. The next night she was running around at a party and stopped suddenly saying her eyes were very blurry and she cried alot.
we took her to hospital where they did CT's, EEG'S, VEP's, MRI & opthamology exam.
Her EEG Showed "Benign focal epilepsy".
Over the time in hospital I began to notice a pattern. She would get quite hyper, her heart would race, she'd have a pain in the backs of her legs, headache, numb spots & then her vision would get very blurry for about half an hour and she will cry and get very emotional. after that she would be SO tired and fall asleep. (Has NEVER slept during the day!) has miagraine for quite some time.. And then the episode would repeat a few hours later. I've since realised there is also a very subtle blank stare period.
I've noticed her running around is a trigger & certainly she is quite affected after with headaches & miagraine.
They have her on medication, even though they arent 100% sure its epilepsy!?? (One neuro even told us she is making it up!! :mad:) its all very frustrating. The next Neuro said it is likely to be complex partial seizures or Miagraine (which has lasted 2 weeks?)
She has been on her medication a few days now & it seems to be helping :)

What is your experience with partial seizures?
 
I forgot to add she has an "electric shock" or "body zap" feeling when it starts. And she see's blue floaters
 
Sounds like many of the things I experienced when I was a child. I was seen at John Hopkins and they told my parents to follow up on some things. My parents didn't follow up on them and my mom figured I was "slow" or "mentally challenged" (not sure how to politely say it - she told me I was retarded). Given my current state I sure do wish they'd been proactive.

I'm 41, mostly homebound, hold 2 college degrees, military veteran, worked from age 15 til a couple of years ago as employers kept letting me go and refused to keep me employed with all the seizures I was having at work. I average 34-ish seizures a month now, mostly partials with some t/c's. The keppra has reduced the number of t/c's - thank god - hate wetting myself!

So by all means journal every detail of your childs day, meals, sleep, activities, odd behavior. If a dr doesn't listen find a new one. Read the forums, ask questions, research!

For me the seizure activity slowly progresses and it can make for a miserable existence.
 
Thanks so much for replying.
I have been reading alot of stories & there's many lightbulbs going off when reading & seeing similar stories to ours.
Courtney is incredibly smart for her age so she isn't being impaired in that way luckily :)
 
Courtneysmum said:
Thanks so much for replying.
I have been reading alot of stories & there's many lightbulbs going off when reading & seeing similar stories to ours.
Courtney is incredibly smart for her age so she isn't being impaired in that way luckily :)
Click to expand...

YW
You should receive plenty of feedback, information and encouragement here!
 
Maybe ask the mods to move it to a less specific forum, that may help.
 
The blank stare sounds like absence seizures.

Our 8 year old son -- who has tonic clonic seizures (these are the nasty ones where you go into convulsions) and also tonic seizures (this is where the person sort of stiffens for a few seconds) -- anyway, that "running around" thing sounds very familiar, because he often has "manic" behavior before a seizure and also often following a tonic seizure.

That "electric buzz" is a typical "aura" which precedes a seizure.

An EEG with a diagnosis of "Benign Focal Epilepsy" usually means certain characteristic spikes have been observed. Your daughter isn't "making it up" -- as you are obviously aware.

In children, this type of epilepsy is often marked by nocturnal seizures. You might want to put a baby monitor in her room or set up a webcam so you can see if she's having anything at night. Did they do a 24 hour EEG on her while in hospital?

There is a strong link between migraine and seizures. Many of the seizure meds are also used for migraine.

What medication is your daughter on?

Are you seeing a Pediatric Neurologist? We have found it worth our while to see a Pediatric Neurologist that is with a major children's hospital (or teaching hospital).

I don't want to scare you, but it's important to nip this in the bud, if at all possible, as childhood seizures (and seizure meds) can cause cognitive loss and speech loss.

If the current medication your daughter is on doesn't stop the seizures, or if she has bad side effects, I strongly recommend you consider the Ketogenic diet.
 
Hi Karen thank you very much for your reply.
We have been dealing with the children's hospital they have her on clobazam i think it's called. It seems to have reduced them already.
I am pushing now to get the 24 hr EEG.
Would she need to be off her meds for this?
 
Yes, push for that 24 hour EEG. She can stay on her meds for the test. However, if the first one doesn't show anything, they may do another one and take her off her meds to try to provoke a seizure -- not all doctors do this, but some do if they suspect a tumor or lesion. A lot of the lesions are hard to pick up on the MRI, but if the EEG can reveal where the seizures are starting, that gives the doctor a clue as to where to go searching on the MRI.

Clobazam is a benzodiazepine derivative. These drugs are really nice as "rescue drugs" -- if a person is having a lot of seizures at one time. (My son is on a similar med right now because he's in a bit of a crisis). But they are usually used just temporarily, because after awhile the effect wears off. They can also be highly addictive, which means that when you do need to wean off, a lot of seizures can happen during the wean.

Some doctors use the benzodiazepines as long term adjuct medicines (with another med), but others prefer not to because of reasons above.
 
Yes they said this is a short term drug to try as it's fast acting.
I wonder how the EEG works when the meds are controlling seizures???
 
Well, sometimes they'll have seizure activity, even when on seizure meds. This is especially the case with certain childhood seizure disorders, such as Lennox Gestault, Landau Kleffner and Dravet Syndrome -- if children have these syndromes, their EEGs will usually show some sort of characteristic spikes or waves or something -- especially when they are sleeping -- which is why you want the 24 hour EEG. It may come up with nothing (our first one did), but if so, it pretty much rules out the 3 nasty syndromes I just named. But, if a child does have Lennox Gestaut, there is a specific med that is used to treat it (Banzel, and one or two others). The same is true of Dravet Syndrome -- also with Dravet, there are certain seizure drugs which will make it worse.

In your daughter's case, since she only now began presenting with seizures, it's unlikely she has one of those.

But at any rate, most docs don't like taking a child off meds just to catch a seizure on the EEG, because one you lose control, it's hard to get it back again (that's what we're dealing with right now).
 
Hi, I have a 19month old who has a variety of seizures. He was first hospitalised at the age of 7 months after a large cluster of smaller seizures in the early hours of the morning. He has has had 5 EEG's 4 clear the 5th showed slowing on the back right hand side of his brain. For awhile he was having 150 very short, a couple of 2nd's each seizures, every day. I rang the Nureo we had seen twice in hospital only to have a message passed back to me by his receptionist that she was told to tell me he has Shudder Sydnrome thats it, he would outgrow it but if worried I needed to go back through the ED again. I was so frustrated as I was not in the mood to tell my sons story over and over again and have people not believe me until they watched the footage. His receptionist was fantastic and gave me the number of a private Nureologist who has been amazing. He kept looking and at 18months he had an MRI and they found a lesion near his putamen in the centre of his brain.The Nureologist explained it didn't show the EEG's as it was to deep in his brain. My son has lots of different forms of seizures but is now on Tegretol which is helping control some of them and it is like he has come out of a fog and is now able to interact with his 5 yr old and almsot 3yr old brother and sister like a normal toddler. He still has bad days were he appears to have a headache, has times where he walks stiff or is unable to walk due to being very NQR. His sleep is all over the place and the only way to describe it is active. Still has seizures but more like a handful, if that, of the smaller seizures a day, some absence, some partial's with strange arm movements. As he is no longer have the high number os seizures his development has come such a long way and in some areas, on a good day, we have been told he is advanced for his age, other areas a bit delayed bit in all OK. At child care he has a lovely assitant come into his room for 5 hours a day not just for him but to cut the ratio of carers per child down and it also means if he is having a bad time she can be with him. Luckily child care is at my work so I am only a 2min walk away from his room and often look out of the windows in my office and see him and my older 2 kids playing.
We have an appointment tomorrow to get back the results of his Lumbar puncture and other blood tests he had when he had his MRI and to see what they can tell us when they look at all the recent results put together with his older results.
I was also told my son at just under 7months was doing his "shudders" for attention and it was nothing, 2 weeks later we ened up in the ED. This GP has since appologised and recently saw me in the waiting room and let me know he had seen my sons MRI results and you could see he was sorry.
Keep looking if you are not convinced with what Dr's say. I had a GP and a Nureologist tell me all was fine and it is only thanks to the most amazing Nureo and Paed we have now that the search continued and they uncovered the lesion in his brain. No one knows where the lesion will go, if it will grow, it will go away, if it will affect his development more but at least they now know to keep an eye on it. He has to have regular MRI's until he is 10 yrs old if it grows at all or if his condition worsen they will be sooner and the Nureo said he will discuss the next step with us.
Sorry long post. As you can tell I am a mum on a mission. I have to speak up for my 19month old as he is unable to and I look forward to the day when he can tell us what is really happening or better still he outgrows everything and has no need to tell us.
Take care and I hope you get lots of answers for you daughter.
Donna
 
Donnajane
Thanks for your reply.. I have to ask about the lesion

We were told there was a cyst in the centre of Courtney's brain that was 9 mm I think they said, 1 mm off the size they would investigate it further. They said Categorically NO it would not cause these symptoms??
 
The first (short) EEG showed that my son (8 yr old) had focal epilepsy. He was put on AED and that was it. After one yer of me complaining that he was not getting better they finally did a long EEG which showed patterns typical of CSWSS (continous spike and wave during slow sleep). The road to follow is different when they have this but mypoint is that a long EEG should be done immediately when epilepsy is suspected because especially in children things happen during sleep (and in the case of my son you could not see anything from the outside, she sleeps like an angel). So ask for a long EEG, it could really be helpful. Good luck!
 
My sons lesion is unknown we have told it could be a tumour but now we wait and see "what happens" He has to have regular MRI's until 10 and if all of these are "clear" and it has not grown at all it will "dismissed"
Due to its location, Putamen, we have been told it is probably causing his issues as he has quite a variety of siezures and other strange things happening. They won't be able to say for sure unless it grows and his condition worsens or if it goes away and his condition stays the same.
Sorry my response is probably not much help.
Donna
 
You must log in or register to reply here.
Back
Top Bottom