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Breakthrough for over a year, now seizure on EEG

Sun, 01/24/2016 - 14:16

I am new t this.  My son is 7 and has been diagnosed with Epilepsy since he was a baby.

His seizures had been well controlled by Keppra until about 2 years ago.  He started having breakthrough seizure every so often (once every 2-3 months), upping his dose on Keppra and uping the dose on Gabapentin as well which he was taking for his tone (He has CP).

When he started his breakthrough seizures, we were referred to Epilepsy specialist who was through and we were happy with.  But he left the practice last summer, and his care was transfered to his CP neurologist (non epilepsy specialist).  It was fine as we didn't see any breakthrough then and we just needed neuro to prescribe his current meds.

Last 3-4 months, he started having behavioral breakdowns more and more and it started to get more aggressive.  We also noticed he may not be sleeping well.  We always wondered how well he is sleeping, but recently I woke up in the middle of the night and noticed that he was awake in his room playing puzzles.  I would have never knew if I happened to wake up and check on him.  He doesn't bother us.  He just play quietly in his room.

Anyhow, he had a big breakthrough last Saturday night.  He started vomiting and we knew only because he was sleeping with us that night.  We started to talking him and noticed he was seizing.  His breakthrough seizures had been those complex partial seizures that he loses his vision.  He says it's dark and can't see.  It lasted over 10 min even with his rescue med, so I took him to ER.  He vomited again in the car to the ER.  He eventually fell asleep and got out of seizure about 45 min after first we noticed.  His breakthrough seizures we have seen for last couple years been same type and always prolonged.

We had EEG done the following Tuesday.  By the way, he had had so many EEGs done through his life and it was always "abnormal" but no seizure activities.  We just assumed that would be what would happen this time.

Although this time, there was seizure activities on EEGs.  I have been calling and getting back and forth with his neuro's nurse.  His neuro added Zonisamide and told us to follow up in 2 weeks and they would most likely up the dose.  The nurse told us that neuro saw seizure activities on his EEG, but couldn't give me more detailed as the report was not up in the system.  She said neuro said he was having occipital lobe seizures.  What does that mean?  Does that mean he is having seizures all the time?  I asked if he should be referred to Epilepsy specialist and his neuro doesn't think it is necessary.  I want to know what the plan is for him.  I want to know what is going on while he is sleeping.  I wondered if we can request to have sleep study on him.  Does that not necessary since they saw seizure activities on his EEG?

I just need someone's advice what we can or should do.  Should we seek Epilepsy specialist even though his neuro said it is not necessary?  Maybe second opinion?  What would you do if it were your kid?  Any advise/thoughts would be appreciated.

Thanks for reading long story.  I am not good with samalizing my thoughts...

Comments

You posted he had he had had

Submitted by just_joe on Mon, 2016-01-25 - 14:55
You posted he had he had had so many EEGs done through his life and it was always "abnormal" but no seizure activities. Those abnormalities are the same thing as seizure activity. They are spikes or waves. The EEG is showing the electrical activity coming from his brain. Just like a EKG showing the output in the persons heart. The neurologist he is seeing now can be all your son needs. I have had many different neurologists and when I was diagnosed they were specialists. Once they know what the diagnosis is and they see his chart they have information they need. Let him treat your son and then work with him. People do not know that medications and dosages do need to be checked and at times increased. I had 4-5 dosage changes in about 9 months. A large amount of growth or hormonal changes do affect medications. I was changing from a kid to a teen. I grew almost 10 9nches in height and gained 50 lbs. Psrents want to knopw whats going on and I do understand that. Relax some the neurologist will have a plan. You can ask for a sleep study and the neurologist may do one. However it could be a waste of money since the EEG's are giving him the information they need. The neurologist might want an MRI. I say that because the EEG has abnormalities (seizure activity) and they know where they are coming from. The MRI shows the brain and anything that is in it that shouldn't be. The MRI doc did that was checked closely he found scared brain tissue. It came from a hemorrhage to the brain which came from a blow to my head. If this were my son I would discuss everything with the neurologist first. Let him give me a plan. Understand that your sons original Specialist was associated with this one so they worked together... You can seek a second opinion but it will not give you any more information since all his EEG's have abnormalities. Depending on the neurologist and the one reading the EEG, Some are called Abnormalities. Others call them Seizure activity. Seizure activity is not a seizure itself. The start of a seizure is an electrical impulse going off in the brain the seizure is the chain reaction caused by that impulse going off wrong. Have you ever stacked up dominoes all lined up? Tap the first (electrical impulse going off wrong) fall into the next causing them all to fall down. I hope this helps Joe

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