Community Forum Archive

2 year old w/new seizures

Thu, 11/28/2013 - 15:33
Hi all-needing some support over this long holiday weekend before I google myself into submission... My son is almost 2, and received a diagnosis of hypotonia around 1 year old. He has been in PT and ST since, and is also under the care of a pediatric neurologist. He has had bloodwork (CBC, thyroid, metabolic profile, chromosome analysis (full only, not partial), etc) that all came back normal. A few months ago, we started to notice him doing a strange eye flutter- his eyes sort of roll back, he lifts his head a bit, and his eyes blink rapidly. It only lasts for 3-5 seconds, and he seems to be aware of his surroundings during the event (he'll continue trying to out his fork in his mouth, etc). The events seem to happen when he is tired or frustrated. The neurologist suggested an EEG, but felt that it was probably behavioral. A few weeks ago, the eye blinking escalated into what I'm certain were two absence seizures- unresponsive, drooling, etc. they were on the same day, and each lasted less than 20 seconds. We had the EEG, which we were told was "very abnormal" especially during sleep. Of course, our follow up appt was cancelled bc the neuros wife had twins. Then this past thursDay, the blinking episodes became so frequent that he was disoriented, etc. I got in touch with another neuro in the office, who sent me to our ped. He had several episodes while she examined him. She phone conferenced with the neuro and they put him immediately on topomax. We saw 2 minor blinking episodes the next morning, but since then, nothing. Other than those 2 instances, the blink g never escalated into an absence. We had an MRI yesterday, but of course no one will read it until next week. My poor little guy is a zombie on the meds. :( We'll finally he to see our neurologist Next Thursday, but that is such an eternity away... Can anyone help me step away from dr google? Is the fact that the blinking stopped immediately with meds a good sign? I can't even figure out what type of seizures these are since he seemed aware when they were happening. Why would they be worse during sleep? I'm terrified. Get the MRI results. I do have a family history of epilepsy (sister and paternal grandmother) so I'm trying to remind myself that all signs point to childhood epilepsy, not a brain tumor or injury. Help a scared mama out...

Comments

Re: 2 year old w/new seizures

Submitted by nicki on Thu, 2013-11-28 - 18:58
If you weren't frightened something would be wrong with you. But here is the thing. Your a good mom. You noticed something that was different about your child and got help. Usually mommies instincts are right you know. Hes taking his medication and from what you say it seems to be helping, which is great news. Sometimes it takes our bodies time to get used to medication or he may be experiencing side effects either way it something that can be discussed at his next appt unless they become unbearable. As frustrating as it is it takes time for test results to come back. I try to take it as a good thing because they would call you right away if something major was wrong. Trust me if they had seen a tumor they would have called you by now. From my own experience with a child with a food allergy, stop searching the internet. Because some horrible diseases and some very benign once will fit your child. Second it can seriously affect what you tell your doc (thank goodness most are aware of the internet) because you read all these medical terms (but do you really know what they mean) and some will stick in your head and then there will be somethings you will be wondering I wonder if my child is experiencing that. Making you forget what you originally were going to say. Tell your doc what you see and what happens when these episodes happen and keep a diary. There is one on this website to help you. And just for your reassurance I'm a mom and I have E and live a completely normal life.

Re: 2 year old w/new seizures

Submitted by mereloaded on Fri, 2013-11-29 - 08:17
You are so lucky to get a neuro so soon! Anyway, epilepsy is worse during sleep because it has to do with awake/sleep patterns when the brain is asleep and then aroused, that is when you see th electrical patterns of the brain altered. During EEG they want you to go to sleep o this changes can be observed. There is such thing as nocturnal epilepsy where people just have it n their sleep, others just have it right after they wake up, some others any time. Also, epilepsy can be brought up by triggers. Lack of sleep and stress are the biggest two triggers. Consistent sleeping times and a stress free la lifestyle are a must for people with epilepsy. As far as the medication, side effects are at their worse the first two weeks of the medication, nd hen they seem to taper off. With that being said, if you think your child is overly medicated, please CALL your doctor immediately as medication adjustments are VERY common for people with epilepsy. Reducing the dosage will ease the drowsiness, please call, they can do this over the phone if needed. Last, MRI that are negative are common with epilepsy patients. Most people with seizure disorders never will know why they have it, as a matter of fact, a lot of neuros ont bother even investigating other than MRI and EEG. You are lucky you got blood, metabolic and genetic tests. Best wishes from another mom of a child with epilepsy

Re: 2 year old w/new seizures

Submitted by just_joe on Fri, 2013-11-29 - 10:02

Mothers are wonderful.

You were doing what many people whous shrug aside. Noticing little things which do happen to kids.

The EEG showed abnormalities (seizure activity) there is information in the WEEG which can be used in looking at the MRI. That information is generally where the spikes are. I went thru a battery of tests and about 20 EEG's and the neurologists found nothing. I fell asleep in the last test which was another EEG. The saw an abnormality in that EEG and they went to the neuro-angeogram (todays MRI) by using the EEG information the looked closer and found scared brain tissue on the left lobes of my brain. That was the cause of my epilepsy.

Relax and stop searching the neurologist will be informing you what they found.

It geberally takes about 2 weeks for the body to get used to a new medication and there may be side effects so watch for some but understand your next visit the medication will probably be adjusted up or down.

I would suggest you get the diary at the top of this page. Watch the video and use the diary. It lets you enter the seizures their length of time in the seizure. Any side effects can be noted. Medication taken or not. There is a note pad in it so you can note anything different. The diary and the information put in it can help your neurologist come up with possiable triggers procedures and medication changes.

Set back with you son and play have some fun relax. The more you look up the more information you may read that may not be aplicable to your son.

I hope this helps

Mothers are wonderful.

You were doing what many people whous shrug aside. Noticing little things which do happen to kids.

The EEG showed abnormalities (seizure activity) there is information in the WEEG which can be used in looking at the MRI. That information is generally where the spikes are. I went thru a battery of tests and about 20 EEG's and the neurologists found nothing. I fell asleep in the last test which was another EEG. The saw an abnormality in that EEG and they went to the neuro-angeogram (todays MRI) by using the EEG information the looked closer and found scared brain tissue on the left lobes of my brain. That was the cause of my epilepsy.

Relax and stop searching the neurologist will be informing you what they found.

It geberally takes about 2 weeks for the body to get used to a new medication and there may be side effects so watch for some but understand your next visit the medication will probably be adjusted up or down.

I would suggest you get the diary at the top of this page. Watch the video and use the diary. It lets you enter the seizures their length of time in the seizure. Any side effects can be noted. Medication taken or not. There is a note pad in it so you can note anything different. The diary and the information put in it can help your neurologist come up with possiable triggers procedures and medication changes.

Set back with you son and play have some fun relax. The more you look up the more information you may read that may not be aplicable to your son.

I hope this helps

Hi! I just wanted to know if

Submitted by airagamos@gmail.com on Tue, 2014-04-08 - 01:28
Hi! I just wanted to know if what type of seizure my son has? he is now 2 1/2 years old. and lately he experience continuous jerk that last for 1-2 mins. usually the jerk is in the shoulder. but when it is happening he is conscious and even complaint at me to the point that he himself got angry that he can not control the movement. Is there hope that this type of seizure would disappear if he reach the age of adolescent. He is now taking maintenance for 1 month already and the name of the med is depakene syrup. Somebody told me that epilepsy may disappear when reaching the age of 7 or above. How true is it?

This is a test follow up.

Submitted by brucecronlund on Mon, 2014-05-12 - 12:59
This is a test follow up. Please disregard.

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