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ksquared

New here. Thought my son was having absence seizures, but maybe it's more?

Topic: 

Don't know if this is the place to start, but here it goes.

My name is Beth. I have two children, Kyle (8) and Katie (6 on 12/31). About a year ago, my husband and I started noticing that Kyle would "zone out" during normal conversation. It wasn't that he was distracted or daydreaming or just not listening. It was like he left us for about 10 seconds. When he'd come back, he didn't even know what had happened or why his dad and I were yelling his name.

My daughter had an undiagnosed hearing loss that led to a speech delay, so my first thought was that Kyle had a hearing problem. I took him to the audiologist in February and he passed all hearing tests with flying colors. So then I assumed that he just wasn't paying attention to us. I can't remember the frequency of episodes throughout the spring, but I know he had them. He plays baseball and when my daughter and I would meet my husband at the ballpark, he'd tell me that Kyle was in his own little world that day.

I intended to bring it up at his ped check-up in the summer, but for some reason, the incidents didn't seem so plentiful then. Maybe he was having them and we weren't noticing them because the summer is low-key around here. Maybe he wasn't having them as much because he wasn't as tired as usual (he tends to have them in the afternoon/evenings). So I didn't say anything to the ped.

When school started this year, he started having a lot of them. My mother-in-law picks the kids up from school in the afternoons and she noticed him having two or three most afternoons while she was working with him on his homework. When I went for a report card conference two weeks ago, I mentioned them to his teacher. She said that she hadn't noticed them, but that it sounded to her like a petit mal seizure.

I'm not this teacher's biggest fan, so I just filed this away. That weekend, though, Kyle had several episodes, so I Googled 'petit mal seizures.' That led me to 'absence seizures.' All of this sounded exactly like what was happening to Kyle.

I called the ped and he had an EEG yesterday. He was sleep-deprived, and had one episode before the test began. During the sleeping part of the test, I know he had at least one that I could see (the room was dark and I really couldn't see him that well at first). He makes these chewing/smacking movements with his mouth when he has them and that's what I noticed. Then they did the hyperventilation part of the EEG. Not only did he have an absence seizure, but he also had what I would call a classic seizure -- his back started arching and his hands were shaking.

We have at least two days before we get the results of the EEG. I'm fairly certain that our pediatrician will refer us to Texas Children's Hospital in Houston, since there are no pediatric neurologists in our area.

My question is, from what y'all know, does the more violent, convulsive nature of the seizure during the hyperventilation part possibly mean that Kyle has more than just absence seizures?

Just for more background, he is a healthy kid. He rarely gets sick -- during the summer, he usually gets an ear infection from all the swimming he does. He makes all As in school and is in the gifted and talented class. His behavior is good. He has never had any major head trauma that I know of. He is a boy, though, and plays outside all weekend long. But I believe that if he were ever hurt that badly, I would know about it. He doesn't complain of headaches, although he told the tech yesterday that he does get them. His birth was normal and he was full-term. To my husband's and my knowledge, no one in our families have had any sort of epilepsy or seizures on a regular basis.

This is very scary, as I'm sure y'all know. Any experiences or advice is much appreciated!!

Comments

other seizures

Hello and welcome!!  I am a mother to two children with Epilepsy.  My daughter was labeled with classic absence seizures at two and a half. Just recently, based on observation and another EEG she has been labeled as having "generalized seizures".

 I really hate to say this but if he is only having absence seizures, then you should not see any type of tonic clonic (jerking or stiffening) movements.  It sounds as if there is something else going on.

With that being said however, it is my understanding, according to our neuro, that children with absence seizures that are not controlled by medication have a 50/50 shot at having a tonic clonic seizure. This could be a one time thing that may never be seen again in your son once the absences are controlled by medication.

You would be amazed at what sleep deprivation or illness can do to seizures. It may very well be that this occured soley on the fact that he was overtired. My son who is eight only has seizures at night only if he is overtired or getting sick. No other time. His are the big ones and I can relate to how you must have felt seeing your son have that seizure.

This is a GREAT place to discuss, vent, and ask for prayers when you need somewhere to go. The wonderful parents on this site have helped me deal with my feelings regarding having two with E.

Take care!

Jean

 

thanks for the support

Jean -

Thanks for the feedback. I feel a little at ease now that there is a posssiblity that medication may not be needed.  I'm just going to take it one step at a time

Thanks again

Sue

For anyone who has posted on this thread...

Have any of you had your childs chromosomes tested, lots of illnesses like epilepsy and ADHD or disorders are related to chromosome abnormalities - if they are overlooked you can go on obliviously without information which might help and explain your childs problems.

My daughter has been diagnosed with myoclonic,clonic,tonic and clonic tonic, and febrile seizures and absences. Although my son also has epilepsy nothing showed on his EEG - even though myself and my Mum and the neurologist saw him have a myoclonic seizure and some absences during the EEG. EEG's are not always as informative and useful as we would like them to be and interpreting them is even harder - my daughter's EEG - showed activity that she had 100s of seizures of varying types on a daily basis. It was that severe they even thought she had a tumour - but her MRI was clear apart from a diagnosis that her petruitary gland doenst work properly.

Absence Epilepsy

Hi, my name is sue and my daughter erin just had an eeg yesterday to diagnose the extent of her absence epilepsy.  My daughter does have some learning disabilities regarding her auditory processing, but I am just finding out about her epilepsy. She is 8 years old and a few months ago was complaining that her brain was hurting and she did not feel like herself.  She kept writing me letters to tell me this as she has some trouble communicating verbally.  I contacted the school whom recommended I see a neurologist.  I waited about 4 months and didn't think much of it.  She was not sleeping well at all and had difficulty even falling asleep.  I had witnessed some unusual behaviors and noticed her being very compulsive about certain things (ie. hand washing, sleeping on her bed which she kept saying was dirty, etc.)  My husband and I took her to two child psychiatrists and they immediately medicated her w/Lamictal (a drug usually used for epileptics)(Keep in mind at this point I had no knowledge of any form of epilepsy)  They informed me she had adhd.

My daughter had a rash from the drug and after taking it for about a week discontinued usage of it.  She looked horrible.  She was pale and just not herself.  Within about a month she completely stopped her compulsive behaviors and was sleeping somewhat better.  Honestly, the medication had no bearing b/c she was not on it long enough.  Anyhow, in the meantime a few weeks later her speech teacher informed she had witnessed some unusual mannerisms that my daughter had displayed just around the time she had taken the meds.  She had said her eyes rolled and she seemed a little out of it and had no recollection of what the teacher had just taught.  She told me she had informed the principal, but I was never notified.  I told the pediatrician and in the meantime was awaiting my neurologists appt.

Once at the neurologist, he had sort of dismissed why I was there.  He had administered a vector test and my daughter went into a petit mal seizure right before my eyes.  It was a bit freaky.  He told me she has absence epilepsy and we are awaiting our eeg results to see if she needs to be medicated and to what extent.  I told him she had been on Lamictal for adhd and he said that could increase her chances of having a seizure.  It all sort of made sense.  I had never witnessed I seizure to my knowledge but have seen her spaced out sometimes and I would lose patience with her when I thought she was not listening.

I am concerned b/c my 6 year old has already had a seizure at birth and 3 febrile seizures by age 5.  Her seizures were more convulsive in nature (ie. shaking, teeth chattering).  I never really thought much of them but am now concerned for her as well.  Keep in mind I have no family history of epilepsy(I do have a nephew whom was just diagnosed in the autism spectrum)(the neuro said there can be a familial link between the two).  My husband is adopted and we have no history.

Do I start having her tested now as well?  I wonder if my older daughter will have to discontinue her favorite sports?  I am trying not to tell her too much and get her upset w/out knowing the extent of it.

Thanks for letting me vent!

Re: Absence Epilepsy

Sue, I'm just reading your post now, but my 11y.o. daughter is following the same pattern as Erin. We have already gone thru Lamictal (Had the rash,)  then Keppra, (increased the seizures when dosage increased), then Topamax and Keppra (no noted improvement), and just yesterday began with Zarontin and Keppra.  I obviously don't know anyone else whose child deals with absence seizures, and am interested in the other behaviors you mentioned.  I see those, too.  And I share the sports concern as well.

Thanks, Susan

 

 

Re: New here. Thought my son was having absence seizures, but ma

For Beth about her son Kyle...

Just curious as to the results of your son's EEG? My seven year old daughter is having an EEG on Monday March 10 for the same symptoms and characteristics as Kyle. They are doing the EEG to "rule out" absence epilepsy, but the more I read about it the more I think this may be what she has due to the frequency of the staring spells where she is "out of it" so to speak. She also has a tick disorder along with the staring spells where she clearly is losing information and instruction during school. Other than this, she is a typical healthy kid who does well academically and socially like Kyle.

And in regards to the episodes lessening during the summer... I was told that the seizures and ticks are intertwined with stress and sleep, etc. so they may subside during the summer months as children are less stressed and able to sleep later in the mornings. This also occurred with my daughter.

Thanks in advance for any insight you can provide!

Re: New here. Thought my son was having absence seizures, but ma

Hi. I probably needed to come back and update my original thread anyway. Kyle's EEG indicated generalized absence epilepsy. The closest place for us to get treatment is Texas Children's Hospital in Houston. To see a pediatric neurologist was a 6-month wait, so we saw a nurse practitioner who specializes in pediatric neurology. We were very happy with the care he received there. She put him on Lamictal (generic: Lamotrigine), and we did a gradual dose in order to avoid a dangerous rash that is a side effect. He hasn't developed the rash and is up to two tables in the morning, two in the evening and his seizures are gone! The NP and my husband and I decided to stop at this point; that way, if he needs more medication as he grows, we have a place to go to. We couldn't be happier with the results. Now, it's just the waiting to see if he outgrows them.

 

Good luck!

Beth 

Re: New here. Thought my son was having absence seizures, but ma

Hi There,

I don't know if this will help or confuse you, but as someone way older than your son who has been dealing with seizures way longer, I thought I'd take a second and reply back to at least answer your question about the EEG, and maybe give you a little peace of mind that the whole diagnosis doesn't have to change things too much.

I was diagnosed with epilepsy (absense/peti-mal seizures) at age 5.  I'm now 33.  I was never really a brilliant student growing up but pulled off average grades.  Finished high school, got my university degree is sociology & criminology, worked in information technology & am just kinda in between career choices working a crappy call center jobs as I decide between getting my masters in social work upgrading technical certifications -- without a driver's license staying in technology is hard!! It all comes down to money, really, as I'm practically married to the great guy I've been with for 6+ years and we gotta do what's right for both of us.  He wants us to be financially secure before we get married, and with the economy going down hill in Canada we just live happily thinking we'll be in debt 'till we part. HAHA!

Anyways, moving on...now that you know epilepsy and seizures really can't impact life too much, to answer your question.  I've had more EEGs than I can count in life.  Some sleep deprived, some ambulatory, some standard.  In some of them there is activity, in some nothing and they end inconclusive.  My advise, get 2 or 3 EEGs with the same results before you worry.  In the meantime, keep what most people here would call a "seizure journal" to try to find the triggers.  As your son has a seizure what is different in life.  Did he stay up later than normal?  Did he take his meds later, or off track?  Was the weather different?  Too much caffeine?  Too much sugar?  Coming down from a sugar rush?  Hours & Hours in front of a computer/video game system with no break? Watching a really flashy movie (star wars series, matrix series for example).  Growth spirts (i.e. hormonal changes).  People have different triggers.

My triggers: inconsistency in life, stress, weather changes, hormonal changes, aspartame, caffeine, just to name a few.

All you can do is monitor things and work with the medical team, best you can.  You'll probably work with doctors lots for awhile, so find ones you trust and like.  It counts for a lot trusting the medical team.  Also, good luck with Lamictal.  Been there, it didn't work for me when I was 22, but as I say everyone is different.  Personally, I'm always on combinations - right now Topomax, Keppra & Clobazam.  Those 3 work okay, but may change in June.  Time will tell.

 Good Luck.  And remember, knowing what triggers things can help as much as anything.  Let the medical team analyze the reports - try and keep track of when things happen and what was different that day to give the medical team more to analyze.

~Erin/GG

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