parents of kids with absence seizures

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mymanuelita

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Hello,
Is there anyone out there who has children with absence seizures? I am really hoping to connect.
Thanks,
Kelly
 
Our three year old son has absense seizures. There isn't that much info out there that I've found that pertains to infants, toddlers or crazy three year olds like him. I hope you've had better luck. Any questions I can only answer from our experiences over the last two and a half years.
 
Thanks for the response. I have tons of questions because-like you I haven't found much about it. Do you have your son on medication? Does he seize often? Is he in school?

My daughter has been having them for about a year and we just figured out what it is this month. We went to a neurologist who gave us tons of generic information and no reason to follow up if we don't use medication. If we do use medication then he is willing to do regular checks on her blood levels for the meds and EEG's for seizure measures. I don't know if it is worth the side effects to try meds and have regular monitoring or if she will be ok left alone?

What's your experience with this?
 
Do you know if there is permanent damage done to the brain as a result of seizures? The doctor we spoke with was very vague about any studies done about that. He was really insistent that we need to put her on ethosuximide (Zarontin) for safety and to help with the learning process and didn't have options other than that. So I want to know if I am hurting my child more by allowing her to have these seizures.

How is your son doing?
 
At his first neuro visit the dr said gabe was having two to three hundred seizures a day. We left with a script for keppra and no real answers. Keppra was horrible! He actually had convulsive seizures after the second dose. Apparently sometimes when you rapidly calm seizure activity in one part of the brain other areas will act up even if its not usually prone to seizure activity. Gabes been on lamictal it was bad too. He's now on ethosuximide and. Zonisimide. the seizures are still at an absurd level so off to new neurologists we go. I have read and been told by more than one dr that seizires have an accumalative effect on the brain. Like a punch to the face hurts but goes away with no lasting affects but if you take a couple hundred on a regular basis you're permenatly punch drunk. Crude example sorry. How bad are the seizures? If they aren't affecting her daily activities then I would hold off on meds. What tests have been done? Has she been to a genetisist?
 
Wow-your little guy has experienced a lot so far. How do they track the amount of seizures? My daughter has many visible seizures everyday, but they are short lived and I am unsure of how many she is having that I miss. During her EEG the technician said that it appeared that she was having seizure like waveforms constantly and my daughter was asleep during it. Also, I believe the tech said that my daughter was having the waveforms in all parts of her brain at random intervals and for random periods of time. I am not sure what that means either.Should I talk to the tech about it for more details?

Thank you for the example about the effects. I am most worried about that. Her seizures have not really interfered with her life. At school something is, but I can't prove it was seizures and the teachers feel that she has behavior issues.

To answer your questions she has only had 1 EEG and 1 doctor visit. She has not been to a genetisist.

Are you going to try a different neurologist? Have you looked into the modified Atkin's diet or neurobiofeedback?
 
My son is six and has taken Keppra for absence and tonic clonic seizures from the age of one. He does well on it, and is well-regulated on it.
 
?There are many tests besides an eeg that need to be done before a diagnosis of epilepsy is made. Seizures can sometimes be a symptom of other things. Metabolic disorders, diabetes even food allergiesand a lot of other things can cause seizures. There is also mri and ct tests that need to be done to make sure she doesn't have anything like a cyst, tumor, anurism etc. There isn't always a cause for epilepsy but what if there is? What if there is an underlying condition causing the seizures she's not being treated for? I'm not trying to scare you. I promise. We have been going through the same thing. Having to fight with drs for test that we have to request after reasearching for ourselves. Maybe there isn't any easy answers but I'm going to keep looking. Find the largest childrens hospital near you with neurology and contact them.
 
Yes, Gabe has an appointment with a new neurologist. We have to wait until july but its with a dr at childrens in new orleans that we've read a lot about so I hope its worth the wait. The diets scare me because you have to bottom out the blood sugar and then adhere to an insanely strict diet where one tablespoon could crash the whole thing. Gabe is three and sometimes its hard to get him to eat at all other times its pb&j for days on end. Plus he's the youngest of seven. A strict diet in our household isn't pratical at this time but I have looked into it very seriously.
 
I have had mine all my life ( i am in my 50s). You go to another Neurologist, till you find one who will answer all your questions and give you all your answers. Do not forget this is your childs health, you deserve to be told about all the test and what they do. Ask what side effect the med has that the doctor may want to get the child on. Try to keep a list ( or diary) of when the child has a seizure, and what leads up to it ( before hand - like maybe what was eaten).
 
hi my girl was undiagnosed with peli mal (absence seziures ) She started day dreaming from the age of six . I took her to our gp he said she was a lonley child not to worry . It got to a point where even her school reports said that amy would be somewhere else . When she entered her teens and changes started she experienced her first t/c . Took her to the hospital and again was told its probley a one off . Again it happened where amy fell and hit the corner of her head . I took her back to th hospital and they bandaged her up and wanted to discharge her . I refused to take her home . We stayed overnight only to be told she was here because of her head injury . When the doctor came to do the rounds Amy stared blankley at him . Next couple of days we had the eeg . which did show spikes . She as been on lamotagine then lamicatal and now she is trailing keppra with so far good reasults .
 
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I am a newbie to all this! My son just had his first seizure last week, the ER did blood work and a cat-scan that all came out fine. We are set up to see the neurologist next week, who will most likely be doing an MRI and an EEG on him. My son will be 5 in May, so this is all very scary for him and for mommy and daddy!
 
Hello all,

I just wanted to update our status because I finally feel like we are in good hands and that my daughter will be ok.

I had noticed my daughter "blanking out" early in the summer, but as she is my first and only I wasn't sure if it was normal or not. In Dec. she had a cold and while at her pediatrician's I mentioned them and the fact that she was having trouble at school because the teachers thought she was ignoring them, taking too long to do her work and daydreaming. Our pediatrician thought we should get an eeg to rule out seizures. The eeg showed that she has epilepsy-absence seizures.

We made an appointment with a doc and felt that he was rushing to put her on meds and he didn't give us a clear understanding of things. At that time we chose to keep her off meds and get a 2nd opinion. Boy did that turn out well...

The 2nd doctor did agree with the first about diagnosis and treatment but she had more information for us and was much more willing to discuss our questions and concerns. We were also more in the know ourselves which I think helped.

Anyway, we feel like our daughter will have a much better quality of life-specifically in school and that we are in caring and knowledgeable hands.

I am so grateful for this site because I get so much support and information-which is how I was able to research my questions, realize I had more options and therefore make the best decision for my daughter.

Thank you all so much!!
 
My daughter has complex partials but they used to think that she had absence when she was really little.


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