Anyone have a toddler w/ seizures?

daniella2727

My daughter has been rolling her eyes on/off for a month now. We are going in to see our pediatrician again to move forward with the necessary steps for testing and what not.

Looking for any advice/insight.

ToastieSimons

have you been referred to a neurologist?  That's where I would start. My oldest (4) has seizures but it's common with his genetic disorder.

I would try to video the eye rolling if possible to show the doctor.

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daniella2727

I assume an EEG is what the next step will be, I hope that it occurs as fast as the next day however our appointment isn't until 5 pm tonight so more than likely it won't be until 1 -2 days later. For those of you who have a child who has seizures - what was your diagnosis and how did you get there?

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ToastieSimons

daniella2727 said:

I assume an EEG is what the next step will be, I hope that it occurs as fast as the next day however our appointment isn't until 5 pm tonight so more than likely it won't be until 1 -2 days later. For those of you who have a child who has seizures - what was your diagnosis and how did you get there?

My son was diagnosed at 15mo with a genetic disorder.  One of the complications is seizures.  I'm pretty sure we saw one so the next day we went to the neuro.  He confirmed that it's likely what it was.  Said to come back if we say a second one.  It was 13 months till we saw the next one.  Our new neuro said since seizures are a complication that medication to control them is much more detrimental than one short seizure a year.  So for now we're just watching and waiting.  We haven't seen a seizure in 6 months.

Just remember, while seizures are very scary, they generally are not life threatening.  

daniella2727

Thank you Toastie. What I believe she is having is absence seizures which means none of the typical convulsions are occurring. I swear the occasional eye roll and eye flutter could easily go missed by many. The only reason I picked up on it is because it became frequent. Even my ped wasn't worried during our first visit bc it stopped for weeks. These last maybe 3 - 4 seconds. It is that quick! I did read  that if this kind they are not life threatening and so to hear any positive non judgemental comments is appreciated.

ToastieSimons

daniella2727 said:

Thank you Toastie. What I believe she is having is absence seizures which means none of the typical convulsions are occurring. I swear the occasional eye roll and eye flutter could easily go missed by many. The only reason I picked up on it is because it became frequent. Even my ped wasn't worried during our first visit bc it stopped for weeks. These last maybe 3 - 4 seconds. It is that quick! I did read  that if this kind they are not life threatening and so to hear any positive non judgemental comments is appreciated.

This board is very nonjudgemental.  A LOT of us have been in the position of being told we're crazy, or it's in our heads, etc. So we usually don't respond with "that's normal!"  Try getting them on video if possible.  My son has partial complex seizures he zones out and may have a rhythmic movement and then snaps out of it.  Absence seizures are so hard to convince yourself are real sometimes because they can happen so quick.  Hopefully you'll get some answers soon!

meldoo2002

My boys both have epilepsy and panayotopoulus syndrome which is seizures that cause them to vomit, be incontinent (sometimes) and be verbally non-responsive for up to an hour.  They had these weird episodes where I couldn't get them to talk to me that started with the vomiting… I rushed to the ER twice.  The first time they didn't find anything because he was back to himself before they took him back.  The 2nd time bought us an overnight admission.  We saw neuro the next day and had a 1 hour EEG.  That 1 hour EEG showed clear epileptic patterns on both boys.  We did an MRI in one of them to rule out a lesion or something causing the seizures.  That was clear.  They've been on medication since the day the EEG results were in.  They've both had multiple seizures since which have always required an increase in medication though they are fairly well controlled.  Joey hadn't had one in 2 years, but then had one a month or so ago when he got a high fever.  

I would assume a neurology appointment and an EEG would be your next step.  Having answers really does help sometimes!

daniella2727

We are booked to see a pediatric neurologist in a week. Appointment can't come soon enough - for me! It is a week more to worry. Every little thing she does we now over analyze! She stared out the window - was that a seizure? She keeps rubbing her ear, it is not an ear infection, was it a seizure or is her head in pain? I feel like I am going overboard.

Our pediatrician was very calm about all of this. Granted he is NOT a specialist, but he said that those in his practice that have seizures typically have a lot of other symptoms in addition to the seizures such development delay, change in behaviors etc. None of which Z has (currently).

Question - how do they keep the EEG testing materials on a little one's head who clearly will not want it there?

kcisthebombdotcom

Yep my dd has atypical generalized epilepsy. her seizures started at two and she did exactly what you described. if you have a childrens hospital in your area i suggest you pack a lunch and camp out in the er. we waited five hours but got her as a patient with the head of pediatric neurology and had an eeg and diagnosis in under a week. good luck.

daniella2727

KC were they able to catch the seizures on the eeg? How long was she hooked up for? Did they have to induce them with lights? How has life been since? Is your child having any set backs/delays?

meldoo2002

My children have no other symptoms.  I mean they were preemies though they don't think that's related to the seizures at all.  They don't have any developmental delays.  Truly the seizure medication seems to be affecting their behavior some… extra sensitive, short tempered (or it's cause they are 5), but they didn't have any stand out behaviors that were seizure related.  

For the 1 hour EEG, the had the leads place on their head (both were very good for this… I just talked to them during it.  If you have an iPad or something she could watch a movie).  Then they wrapped their head loosely in some bandages and then I had to get them to fall asleep and nap.  It was done at nap time so it wasn't that hard.  As far as I know for the 24 hour EEG they do the same thing… hook them up, wrap their head, and around here they send you home for the 24 hours.  Then you go back to have the leads removed and data downloaded.  

daniella2727

meldoo thanks for explaining the process!

kcisthebombdotcom

daniella2727 said:

KC were they able to catch the seizures on the eeg? How long was she hooked up for? Did they have to induce them with lights? How has life been since? Is your child having any set backs/delays?

She didn't seize during the eeg but her eeg came back abnormal enough for a dx. she has mild autism as well so she has delays around language and social skills. language, cognitive and social delays are all very common in epilepsy so something to keep an eye out for. through not all kids are affected the same way. in regards to the eeg the best thing is to set it for around naptime then take her somewhere fun prior so she's all tuckered out and falls asleep easily. good luck!

daniella2727

when we met with the pediatrician on Monday to basically go over the full picture and align to a neurologist he tested Z for strep as I guess sometimes strep can cause seizures and they suspected she might have strep weeks ago bc her sister did. Anyone, in the office it came back negative. Then he called last night and said the lab tested positive for strep...I have no idea if there is a correlation between the eye roll and the strep...of course the internet has me now reading about PANDAS and tics...just sharing my journey along the way. 

Z is now on an antibiotic so we will see if there is any response to that in terms of the eye roll stopping. The one other element here is Z has had a fever on and off for almost a month - very low grade 99 - 100. And the past two times she saw the pediatrician it was 99.5 and fingers pointed to teething. Even on Monday when we took her in I had NO idea she again had a low grade fever and STREP - we weren't even there for her to be tested...

Assembly_Reqd

Nate had some weird eye rolling. He has a really poor blink due to muscle weakness in his face. The eye roll happens when he is tired and when not tired, acts as a very long blink to moisten the eye surface. I was freaked that it was seizures, since his brain abnormality has higher chances of seizures developing, but it wasn't.

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daniella2727

@McRib we are on azithromycin and the ped wants her on it for 10 days instead of the 5. I called this AM bc she is still running a low grade fever of 99 - 100 - which for some reason no one is alarmed about but me! And this is day 7 of antibiotics. They said they want to finish her 10 day prescription, wait 2 days, and then bring her in to re-test for strep. In the mean time she is going to see the neurologist in 3 days. She DID have a tick on her several weeks back that we had to remove, I should add. I mentioned that to the doctor as I read it can cause seizures and he said we would have seen other symptoms...

For those of you with children that have absence type seizures - how it shows in their eyes - does that/did that change? Z has gone from eye rolling to now eye squinting, almost like frowning - sometimes it just isn't her eyes but her whole facial expression. 

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daniella2727

@McRib where do you get the igenX and igM conducted - are these blood tests?

i just spent tonight documenting everything from removal of the tick; ongoing fever; eye rolls etc.

Still interested to hear from those whose children have seizures as to whether the type of movement they do with their eyes ever changed as with my daughter from eye rolling to now just eye squinting. 

I feel like this will be a long journey of just ruling things out...

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kcisthebombdotcom

daniella2727 said:

@McRib where do you get the igenX and igM conducted - are these blood tests?

i just spent tonight documenting everything from removal of the tick; ongoing fever; eye rolls etc.

Still interested to hear from those whose children have seizures as to whether the type of movement they do with their eyes ever changed as with my daughter from eye rolling to now just eye squinting. 

I feel like this will be a long journey of just ruling things out...

The squinting may be a sensitivity to light or headaches which are common in kids with seizures. My daughters Seizures are controlled but she still does that from time to time.

daniella2727

Just wanted to provide a follow-up.

We saw the pediatric neurologist today who said that what we are describing is not seizures. He said seizures wouldn't have such a variance in eye movement as we've described from the eye rolling to the squinting to the frowning etc. He asked us a ton of questions and said she has what is is called begin rhythmic behaviors - similar to tics. I was a bit shocked - I self diagnosed and convinced myself what i was seeing was a seizure but I searched for every time of symptom which led to something...

I will add that we are taking my daughter back to the pediatrician to discuss the low grade (constant) fever on Monday and to re-test for strep to ensure it has gone away. And we scheduled her to see an optomologist next Thursday to ensure this isn't an issue regarding her eyes...

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