15 YEAR OLD WITH TONIC CLONIC SEIZURES

HEATHER - posted on 10/16/2010 ( 8 moms have responded )

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My 15 year old had his first seizure on July 28, 2010. We went to a neurologist had a cat scan, MRI, EEG and a 24 hour EEG and they did blood work in the ER the night it happened, all the test are normal. The neuro thought no need for med may just be a one time thing. Then on October 1, 2010 he had three more seizures. He makes a funny breathing noisy, jerks, bites his tongue and is completely out of it until they end then he seems tired and confused. We had him taken To MUSC in Charleston when the last ones happened, they did not do any further testing while in the hospital other than more blood work which was normal. They started him on Keppra and asked that we do another EEG and get the records from his neuro where we live. We done all that and the EEG came back normal again. The seizures always happen when he is going to sleep. We had to take him to the childrens er back at MUSC yesterday and they said it was the Keppra causing all the problems. He had been very ill, tired, dizzy and just not at all himself. They changed hiom to Lamitcal 25mg take once at night for two weeks then start twice daily for two weeks then we see the doctor again. I am so very scared and confused, wondering if anyone my have any info on Lamictal.

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Maria - posted on 01/14/2011

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My son had his first seizure in 2005, age 8 and of course, was prescribed medication immediately. Five years later, the 2 medications that he is on are not controlling his seizures( a brain that wants to seize will seize) but 2 years on the Modified Atkins diet for Epilepsy has decreased the severity of the seizures and has improved his cognitive and social behavior and we have been able to decrease his meds! His meals are clean and basic and very tasteful, rich in cold-pressed virgin olive oil and coconut oil for the all important medium-chain triglycerides. We don't call it a diet, we simply refer to it as healthy eating. He loves the food and always feels full and satified, even the sweets aren't as tempting; he seems to only want them when they are visually available(parties, commercials etc..) Start reading food labels...it's no wonder kids are having seizures!

Erica - posted on 01/14/2011

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Lamictal is a wonderful medication. Lamotragine is the generic name for it. I myself am Epileptic I was diagnosed when I was 5 yrs. old. I got pregnant they lowered my medication to protect my baby from any side affects. My daughter Mikayla was diagnosed with epilepsy almost 3 years ago now. Your son is 15 I know it sounds funny but you should get a pediatrician to read those eegs for you. My daughter had an MRI EKG EEG and a bunch of other test. All of her test came back normal until i had a pediatrician study in nurology look at them she ended up having petimal (spacy seizures) every 1/2 hour My daughter has convulsed, spaced out and even had a walking seizure on me scared the daylights out of me but since we put her on lamictal nothing as far as we can tell her seizures are controlled.yay Lamictal is also used for ADD and ADHD so it will also help with focusing in his class. I wish u all the luck in getting all your ?'s answered

Maria - posted on 01/08/2011

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Lamictal is broad band med ...It made my son sleepy. It worked ok for about a year and half. But my son 13 has intractable eplipsey and we cant find seem to find anything that works. We are on Keppra and Dilantin now and ready to try Vimpat ... How long were the EEG ? You should request an overnight or even 3 day.

Elaine - posted on 01/05/2011

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My 16 yr son started having Tonic Clonic seizures 8/1/10. His first ER treatment his tests were normal and the Dr.s consider that a possible unexplained one time seizure. His next seizure was the 21/11/10, he was then scheduled for further testing EEG and MRI. His MRI has not been done yet but it is obvious that his seizures are a sleep deprivation thing. He has a "TC" the morning after he stays up to later. The Keppra helps him not have the Complex partial seizures, but if he is sleep deprived he will more than likely have a seizure the next morning.It is normal for you to have to try several medications to find what works. It may also help you to know that seizures are not physically damaging unless they last over a 1/2 hour. That is why Dr's will tell you to get help when the seizure lasts 15 min. Short seizures are scary for those that witness them. My son's last about 2-3 min. he is disoriented and tired afterward. It takes about an hour for him to remember everything, he doesn't remember the seizure of course. Learning what triggers your son's seizures will help so much, that way you can try to not expose him or at least expect what will happen.

Carrie - posted on 10/21/2010

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I am so sorry to hear he had another one. It makes you feel so helpless and when there is not identified cause...I imagine that feels like the earth is coming out from under you. So, make a list of triggers...one being bright light. There is a neuro opthomologist here in Salt Lake City named Dr Kathleen Degrie. She and other researchers have developed a lens that filters the light that triggers seizure, migranes and other photophobia/light sensitivity. They are called FL-41. Really, help him learn to see light, tv, video games, 3 and 4-D movies, computers, game stadiums as a trigger. And I hope they gave you some Diastat or some kind of emergency meds to give him if his seizures last longer than 5 minutes or if he has a cluster. I know it is a lot to deal with but you will get better at it. You won't get used to it but you will get better at knowing what to do. My heart is with you....

HEATHER - posted on 10/21/2010

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Thanks for all the words of advice. I am so very scared, he just got back out of the hospital yesterday. On Monday night (10/18/10) he said he had a headache and the bright light at the ball game hurt his eyes. We got home and not ten minutes went by before he was having a seizure. This time he was awake and talking to me then his head started pulling towards the left eyes wide open and then the jerking and he was out. It lasted 3 to 4 minutes. He came back around and we got him to the ER not an hour later he was having another one, they gave him something to stop the seizure and it kept him knocked out for quite a while. We went back to MUSC and he had another EEG and MRI with contrast. All the EEG's have used strobe lights. Once again everything came back normal. They added carbuterol with the lamictal to try and see if it would help until they can build up on the lamictal strength. This is so very scary and I am so afraid something has been missed. His neuro says we may never know why he is having seizures because sometimes you do not find out why.

Renee - posted on 10/21/2010

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My eeg and brain scans were normal despite 5 temporal lobe(staring seizures) daily.My scans were normal too.
I agree with Carrie find his triggers .keep a seizure log .I was triggered by flashing lights .Try watching things like tv, computer,flourscent lights at school(they blink very fast).It takes a minute to find the right drug so hang in there.
We found out after my bran surgery for intractable(uncontrolled )Epilepsy that the spot that was my seizure focus looked normal but wasn't functioning.Thus the normal CT and MRI's

Carrie - posted on 10/19/2010

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My first question is did they do strobe light testing in the eeg. My daughter's stuff is all normal til the strobe light testing then her brain freaks totally out. It is call Proxocymal Response (ppr) or photosentive epilepsy. That means she can't sit in front of the TV for long, we are careful about movies, computer and absolutely no video games. She's 4 years old and had several seizures as a baby but testing came back normal....until she had a seizure after school pictures.
Don't give up on him...keep asking for help and Keppra is a good drug...my little one is on it. Blessings to you and your family. I know this is difficult but hang in there!

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