My son has absent seziures and i think is having bigger ones?

Patricia - posted on 01/30/2010 ( 22 moms have responded )

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Lately hes been doing the small ones and then comes to me to let me know his whole body is shaking. and at his play group he goes to. (i am not there) the worker said he rolled his eyes than put his hands up and was shaking. Does that mean his seziures are getting bigger? All that day he was having small ones and sometime he lose his balance. it be like once every hour. then at night he arch his back and start to shake then stop. he did that twice in 15 mins. If they are getting bigger when do i bring him in? cause his neruoglist cant seem to call us back. Also when hes having the small ones he says his eyes hurt. Is that normal?



Also can they have alot of sensory issue with this? my son has alot. some say its ashbergers some say its just nothing its the seziures. He gets tested april or may 2010. (hopefully).

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Asha - posted on 03/30/2010

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well to me they sound like gran-mal seizures but im not a professional, as i have a 2yr old with epilepsy and im a epilepsy sufferer im pretty familar with epilepsy but if ur son is having seizures of any type then he should be seen by a neurogist asap to assess his condition and to presbribe medication but if ur dr is not responding to ur calls or contact i would find another specialist that will, well with his eyes hurting when he has absence seizures i would say thats pretty normal but as i said im not a professional,but Seizures of any type are a short-circuit of the brain and it affects different parts of the body and not everyones epilepsy is the same as it may be located in a certain part of the brain that is different to another epileptic.
hope i have been of some help and my writing isnt too confuzing
but hopefully ur son will be ok :)

Aileen - posted on 03/30/2010

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make them test him...threaten publicity if they wont your son needs help now . if hes having seizures what doctor is throwing labels like aspergers around. i have two sons whose diagnosis was epilepsy with behavioural problems because the epilepsy can actually cause the behaviour depending on the part of the brain that is effected.

Keri - posted on 03/29/2010

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I had almost the same problem with my daughter! She was 7 years old when we noticed them in school her teacher noticed she was not responding like she was supposed too! Then I took her to her doc and talked to her and she said absent seizures! Then we went to the neuro and they did some tests and it ended up being complex partial seizures in the right temperal lobe ( petit mal seizures) she falls asleep and gets headaches and sometimes twitches her leg or her arm but that has been since she has been on tegratol 300 mg a day 100 in the morning and 200 mg at night! It has worked best for her! I was scared for her but she is better now! It would be good if you could get some other opinions from other doctors! Like from the nemours childrens clinic or something affliliated with sacred heart hospital depending where you are! Look more into it and the different types of seizures have an eeg done and an mri make sure nothing else is going on! What state are you in? Steer clear of caffeen chocolate has caffeen tea soda with caffen and toys with blinking lights anything that flashes and look for yor childs triggers that helps so that you can stay away from those! Some foods have caffeen those are big triggers! Cold medicine with seizure meds are not good they can counter act the seizure meds! Go to a web site called epilepsyfoundation.org and look at the site and just research as much as possible! IT should help with any question you might have! It helped me!

Lori - posted on 03/24/2010

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Patricia,

You don't mention if your son is on any type of medication?

One of the other moms said that you are your son's advocate - she is 10000000% correct! When my son started having seizures, I had to be a royal B@#$&* to get a doctor to take me serious! I called SEVERAL and finally one of them was able to see him in less than 3 months. We started out with guesswork, since they were unpredictable, but at least this doctor was willing to TRY medications to try to find one that worked. We ended up moving and found a new neurologist who immediately put him on a DIFFERENT med, but ... he is controlled (for now - there are no guarantees, unfortunately!) From what I've learned over the years (he started having them 10 years ago) is that every time the brain has a seizure, it is basically "training" the neurons to misfire. Kind of like forming a very bad habit! They will increase in frequency and severity if not controlled, at least somewhat. Get onto that doctor - your son needs you to fight for him!!

Best wishes to you both!!

Jennifer - posted on 03/20/2010

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Asperger's Disorder is a milder variant of Autistic Disorder. That means the person has mild autism but can still highly function normally in social settings. It does not have anything to do with a seizure disorder. A Neurologist can determine if your son has seizure disorder and what types by EEG and maybe other Neurological testing. My daughter has 2 types of seizures which do not usually cause her to shake uncontrollably (Grand Mal) hers are more Generalized Phsyco Motor and absent seizures (rolls/flutter eyes, looks likes she's chewing, staring off, forgets what shes doing, slurs speech and gets confused) I would def push your sons doctor to figure out what is going on with your son. YOU are your sons advocate so push them.

Heather - posted on 03/18/2010

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My daughter has absence seizures. They were just staring at first, but as time progressed, they got longer. She also developed odd behaviors during the seizures. She would hum, wave her hands, walk, play the air piano, etc. The actions were all still part of the absence seizures, not a progression that we knew of. Some of the things would just make you laugh....what else can you do?

Patricia - posted on 02/08/2010

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Hes got a cold which the seziures get bigger when hes sick. i am waiting to see if they happen again. tomorrow it goes up to 10ml of valproic acid and if it still happens then his meds need to be change. i will go threw emergancy next time it happens. He use to have big ones in his sleep at 3 months til 12 months. and is back to doing it sometimes.

Angela - posted on 02/08/2010

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My daughter had absence seizures for 9 or 10 years then one day it changed to grand mal just like that! It sounds like you son's are progressing. Call that Dr over & over til you get satisfaction! Remember those Dr's work for you. Without you they have no paycheck and sometimes they need to be reminded of that! If you can't get them to call you back the next time he has one take him to the ER and demand they call your neuro. That'll get thier attention. I actually had to do that before I found a good Dr. Now I get a phone call within 30 minuets of the seizure. As far as the eyes hurting, headache is common after a big seizure and my duaghter sometimes carries her pain in her eyes like a sinus headache does. hope I was helpful

Rebecca - posted on 02/05/2010

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Hi patricia, My daughter was diagnosed with peti mial epilepsy which is pretty much the same as you have discribed. Hers also started out small but was getting worse i was very fortunate to find a very good pediatricion that specialises in seziures and she has been brought under control it did take a while to get the right medication but she hasn't had any seziures for nearly a year now so there is some light at the end... good luck with everything

Robin - posted on 02/05/2010

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I would get a new Pedeatric Neurologist............ have his medication levels check every week if needed, till his meds are at an even leveled dose.GET AN EEG on him. may need one that is done over a long period of time.

Make sure he is getting his meds on time everyday. eating well balanced meals, also getting his much needed rest. ask your Dr. questions, like, does eating surgary foods,(junk food) contribute to his seizures. pay attention to what he eats and when. you have to be your childs advocate for this disease, the neuologists are so busy they tend to just get to the next patient....... SO ENFORCE you get results. and FAST! get on the Epilepsy foundation website and get information.Find out what kind he has...... I did not even know they had it till it was too late with my daughter. she was diagnosed at 9, and it progressed, alot because she hated the fact she had it. an also I was not demanding enough. she lived with it for 9 years and passed away at the age of 18. so parents be your childs advocate PLEASE. ASK and DEMAND you are they're voice and the one they look to to make things right for them.

Ann - posted on 02/05/2010

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It sounds like it's time for a new doctor ( Who will return your calls!!).My daughter started out with Grand Mal Seizures and once in awhile She has the absent seizures called Partial Complex Seizures. It could be possiable that your child is growing and may need to adjust his medication.

Lynette - posted on 02/05/2010

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Hi Patricia, I won't be able to answer all your questions but I hope I can help. My daughter is almost 3yrs old & started off with Absent seziures, she was put on Lamictal. Recently we have seen the neurologist & upped the dose as she had a full seizure. I don't know if the eyes rolling hurts. My daughter did that before medication. I don't know because she is almost 3 & can't talk. She also doesn't walk & I don't know if that is related to the epilepsy. (recently starting to walk though). She has developmental delays also so It is hard to know what she is going through. I'd get onto your neurologist, keep ringing if you have to. You shouldn't have to worry for so long so keep trying. I hope I have helped :) xx

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YOU DO NOT NEED TO WAIT FOR THE DR TO CALL YOU...GO TO THE ER!!!! that is what I had to do...DO NOT WAIT, DO NOT BE PUSHY WITH THE NEURO...MARCH YOU AND YOUR BABY INTO THE EMERGENCY ROOM, AND GET THEM MOVING. my baby had the same issue, she still has 3- seizures/day. Luckily she had a seizure in the er waiting room and I carried her to the desk and they rushed her back!

Jill - posted on 02/04/2010

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Change Neurologist first! Any doctor not bothering to call back back, especially about something as important as this, needs to be reported.

Crystal - posted on 02/04/2010

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My daughter is 14 and has had seizures since she was 18 months old. She also has alot of "small" seizures..she is still conscious, but she knows she is having the seizure. When he is having them, do his eyes go back and forth? That may be what he is feeling..like the muscles in his eyes are getting a work out, so they feel sore afterward?
My daugher also has some sensory issues. It isnt that she dislikes things..it is that she likes things. She has a slinky in her hands 24/7 (except in school). She uses it all the time..it is almost like a security blanket to her..If I had all the money back that i have spent on slinkies in the past 10 years..i would be very wealthy!
She also has the small ones when she is sick, like you said your son has.
Dont be afraid to keep calling that neuro!!!

Patricia - posted on 02/03/2010

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She called me on monday at lunch to let me know his meds are real low. So i will see if thats why. plus he sounds like hes getting a cold. I hate it cause when he has a simple seziure when he is sick or a cold.

Karen - posted on 02/03/2010

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Finding a pediatric neurologist who actually returns your phone calls is the hardest part! But one of the most important. Ask you pediatrician for several referrals. Unfortunately taking him to the hospital never worked for us either, since by the time we got there the seizures were over. But we have been seeing a great neuro for 2 years now, and with the right combination of meds, he is doing well. Of course he is growing like a weed, and now hormones are starting to kick in, so his dosage needs to be changed more often. Hang in there, it gets better. Just don't be afraid to be a pain in the butt, call every hour on the hour. They will eventually have to call you back!

Patricia - posted on 02/01/2010

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Thank you guys so much. Hes normal afterwards when it happens so when i take him tothe hospital they just send me home. They say he should be out of it. and his doc said theres nothing u can do with the small ones. the other he should be out of it and dont come around after 30 mins. and the ones where there big and hes shaking for more then 5 mins to take him in.
So i get confused. He hasnt had any in a couple days but if they get like that again. i will be taking him in. even if he looks normal. I am soooooooooooo tired. and hate being sent home!

Katie - posted on 02/01/2010

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My son also has a complex range of seizures, they absent ones for him just involve him staring into space frozen with no blinking, sometimes he comes back screaming at the end, but mostly now just shakes his head and continues on with things, it sounds to me like you are seeing a tonic clonic type of seizure, My advice is to take him to your nearest hospital if anything lasts over 5 min, keep pushing for answers. A friend of mine who had epliepsy growing up has told me that when he came out of a seizure every muscle in his body ached, he said he felt like he had been trampled by horses. The seizure is usually uncontrolled electrical impulses from the brain, if that is where the seizure is affecting him it is very normal for him to say his eyes are sore, for my son he has had seizures since 9 days old, as a small bub, he would have a grand mal and then for the next 24 hours scream and be unconsolable. The doctors said it was just because his body was hurting all over. Hope you get those tests done sooner and get some helpful results. All the best!

Charlie - posted on 01/30/2010

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I agree with Heather it sounds like he is developing a different type. You are your son's advocate you need to push and get him seen. My daughter started with absent epileptic seizures and then developed grand mal. His eyes hurting may be normal but I would recomend an eye exam, my daughter is far sided I don't know if it is caused from the seizures how ever she never had a problem reading till the seizures started.

Heather - posted on 01/30/2010

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Call your neuro. If they don't call back, call again. They're there to serve you! It sounds like he's developing different types of seizures and it needs to be addressed. Don't be afraid to be pushy w the neuro.

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