Symptoms of seizure activity

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Hi all,

I just posted an introduction in the Foyer thread, but to reiterate and expand:

My name is Claire, and I'm mum to baby Sophie who is currently five months old. After a traumatic birth in which she became entangled in the umbilical cord and cut off her oxygen, Sophie spent a month in the NICU. The day after her birth she began to have seizures which were quickly controlled with medication.

Sophie has been on maintenance phenobarbitol for five months, and we've just finished weaning her off it completely this week after an EEG scan 6 weeks ago found no seizure activity. We've been told there's a 20% chance she'll develop a seizure condition anyway, and I'm now a bit worried about how to spot any problems.

It's been five days since her last dose of phenobarbitol, and she's suddenly become very cranky and easily upset. I know your average 5 month old has a fair few reasons to be cranky (teeth, for one), but I have a feeling there's something more to it. At her swimming class yesterday, she worked herself up into a complete screaming hysteria over nothing at all, and today she got close to it after being on her tummy for a while. It's a very unusual cry, extremely high-pitched, which I understand can be related to damage to the central nervous system (which she's had in spades). She's also started waking up from daytime naps in full cry, which she hasn't done before, and also starts crying just as she's going to sleep (again, only during the day- different story at night).

I know you guys probably aren't baby behavioural experts and it might well be normal baby stuff we're experiencing. However the fact that this sudden change in her behaviour has all occurred within five days of stopping the medication makes me suspicious. I haven't noticed anything that looks like seizure activity to me, but then I've heard about infantile spasms in sleep and also "silent" seizure activity, and I wonder if either of those could be causing the problem. I don't see any odd motor activity while she's awake, but today for the first time I noticed her eyes glance from side to side three or four times very quickly while I was changing her. It was very brief- is that too quick to be a seizure? Or is it possible?

I suppose what I'm really hoping to find here are answers to a few central questions:

Can anyone tell me what seizure activity looks like in a baby of about this age?

Does anyone have experience with weaning their child off phenobarbital, and do you know what sort of side-effects were experienced?

Is it possible for a baby to have a "silent" seizure or a seizure while sleeping, and is there any way to know that this has occurred?

I'm really hoping someone out there can help because I'm starting to get this feeling of high anxiety while I'm on constant watch for symptoms I don't know about.

Thanks in advance,
Claire
 
Hi Claire,

I'm so sorry your little one is having difficulties. I have no experience regarding a child this young and sz's, my daughter was 6 when her e began.

If you want peace of mind, you can request another EEG. Infantile Spasms are diagnosed by EEG showing hypsarhythmia.

It's so hard when your little one is unable to tell you what is wrong. Never be afraid to ask questions and take her to a specialist. Many pediatricians are not well versed in seizure disorders unless its a full out tonic clonic episode.

I would be sure to tell your neurologist about the eye movements. That sounds like it may be sz activity.

Blessings,

Ann
 
Thanks so much Ann. We do have trouble with our local doctors because we live in a country town, so the GPs are the be all and end all, and the specialists are few and far between. We have to do a 1000km round trip to the children's hospital to see the neurologist. Looks like we'll be back up there soon, hopefully before anything else goes on.

I'm going to keep a very close eye on her for the next few days, and then I'll give the neurologist a call and see what he thinks. I guess if I notice particular times where her behaviour is affected I can try to get another EEG scheduled to match up.

All the best,
Claire
 
Another thing you can do is try and catch the suspicious behaviors on video. We did that and then later took it to our appointment and the epi said, "She has partial complex epilepsy, I can tell you that before we do the EEG." He was right.

Try to get her in for a 24hour VEEG. Since you are traveling such a long distance it would make sense to try that because a half hour EEG may show nothing when indeed there is activity. We did that as well several times to locate the region of the brain that was causing the sz activity. Rachel had damage that showed on an MRI as a mass.

Did you say if she has had an MRI? Have they ruled out any malformation that may be the cause?

I will be praying for you and your daughter...

Ann
 
Great idea about the video- I hadn't thought of that. It seems absurd to hang it all on a half hour EEG when it's so unlikely to catch any activity!

She did have an MRI after birth. Due to her birth asphyxia and hypoxic ischemic encephalopathy she had fairly serious brain bleeds, with the specialist describing it as a 7 out of 10 level of damage. Most of the damage is to her frontal and occipital/ parietal lobes. Despite all that she is amazing- she shows no signs of any brain injury and is right on track with all of her milestones. A real miracle baby. Other than that damage there's no specific malformation. If she is diagnosed with epilepsy I'm sure she'll have another MRI, but until then we've agreed to wait until she's 3 years of age before her next one.

I hope all is well at the moment with your daughter too!

Claire
 
I think you are on the right track with calling your neurologist & the video-taping suggestion. I don't have experience with infantile spasms either (e hit my daughter at 4), but I do think the extreme mood changes are associated with seizure activity so it is definitely worth looking into. I am so glad to hear about all the other obstacles your daughter has surmounted!! You all must be an incredibly strong family!
 
That is fantastic she is on track with her milestones! I'm so happy to hear that! I hope you will stay on the boards and keep us informed about how you are doing.

My daughter is doing very well, thank you. She is 100% seizure free on the Ketogenic Diet and is currently weaning off her final epilepsy med. We are prayerfully coming off the diet beginning in November...

Blessings to you and your family,

Ann
 
HI,. Just wanted to say. When ya get time, try to write down what you see is happening to your child, like when she moved her eyes, the sreaming (if yo can remember time that would be good). do this at night if that the only time you really can get.

I am adult, but i was with friends and sitting done, they said my eyes were moving back and forth for a couple of seconds then they just stoped, then i went into staring and not moving at all ( just for a couple seconds more. They were able to talk me out of it.

Your child is too young to tell you what is going on. The screaming may be the only way of saying something wrong. At this point the child has no idea what is happening.
 
one thing

to consider also, having been on phenobarb myself through my entire childhood, is that part of her behaviors, too, may be attributed (somewhat) to the withdrawall of the med itself. Not all of it, but some of it....
 
have had similar experience with daughter..

Hi,

So sorry to hear of your experiences, we have had similar experiences with our daughter, she has had epilepsy from birth following a difficult birth. She was put onto Phenobarbital at 5 weeks old and remained on it until about 5 months old. Her seizures before she was on Phenobarbital consisted of her fists clenching and her eyes fixing to the left or rightand her just freezing and thren after that phase her limbs would start to rythmically jerk for about a minute and a half, she would then be very tired and sleep for a while, once on the medication she would only experience the first part of the seizure so the fists clenching, go red in the face and the eyes fix,

When we weaned her off the drug, she did appear to have some withdrawal effect, even though we weaned her off slowly.. and she was irritable and suddenly started crying hard for no reason that I could fathom out. Oh and her eyes would roll upwards frequently which I was told was withdrawal.

I hope this is of some help to you and I hope your daughter adapts soon to the withdrawal of Pheno.
 
Hello- I developed complex partial seizures at age 6 but didnt start real treatment until age 13, then again at 23 to now 26 and continuing. My seizures were absence and very short complex partials and now they are longer and more involved. Anyways, my eyes do the the same thing- i call it a "seizure attempt" becuase its a seizure but it isn't a full complex partial that lasts 3 minutes or so..
My eyes will go right, left, right and get "stuck" for a few seconds, probably 5 seconds then it stops. I feel odd after it and it could either be a very short complex partial or an absence. My head sometimes goes to the right and gets stuck as if I'm tracking something visually.
I hope things get better for you and your little one. I would ask as many questions as you can think of. Doctors should know everything that is going on and all of your conerns- even if you feel your asking too many questions.. They are there becuase you hired them to work with you child and you- they are there for you once your in their office.

Please take care,
Crystal
 
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