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Well we're new here, yesterday my 7 year old son was diagnosed with epilepsy...the diagnosis seems sudden to me (not unusual given his medical history just sudden). I'm wondering if there are other parents out there whose kids had one or two seizures in a year, saw a neurologist, and were immediately diagnosed with epilepsy?

In May of this year we had a grand mal seizure that lasted around 5-6 minutes, just a few weeks ago he had a petite mal (maybe the description was lacking because dad only caught the end of it) that landed us in the hospital for an EKG, EEG, MRI, and Echocardiogram. Before we were discharged the doctor (who was incredible) told us we were looking at one of two things probably - a seizure disorder or syncope. The MRI and EEG came back "normal", the echocardiogram showed minor thickening of the aorta and a weak valve, but neither were considered "medically relevant." So we were asked to follow up with a specific cardiologist and neurologist. We haven't heard from the cardiologist yet, but like I said we saw the Neurologist yesterday for maybe 20 minutes and left with a diagnosis of epilepsy and a prescription for Trileptol. I'm confused, I'm concerned...I'm worried about the effect of the medication on my son...you know, all that normal stuff...but it mostly bugs me that the diagnosis was so vague and so fast...any advice or stories similar would be a great help! And anybody familiar with syncope with advice would be awesome too because despite my lack of medical knowledge I haven't ruled that out yet!

Thanks!

Lacy

Comments

Welcome LacyAs for the

Submitted by just_joe on Fri, 2014-12-19 - 10:56

Welcome LacyAs for the diagnosis being fast. All it takes to diagnosis epilepsy is 2 seizures. Those you have posted. The ER doctors ran tests that some ER's don't run. The EEG is a test to show were the electrical output comes from in your brain. In most cases they can and do come back normal. I had 20-25 come back normal before having one in which I fell asleep in. That came back with abnormalities (seizure activity).The MRI shows everything in the brainThe EKG shows the heart rate and BPM. If teh beat is not right they will then have a echocardiogram musch like the MRI it shows the heart. I had epilepsy since 1963 and the diagnosis was made in 1964. All my tests came back normal. Including the neuro-angeogram (MRI of the 1960's). When the EEG came back with abnormalities it showed the neurologists where the activity was comming from. They then looked closer at the neuro-angram. By doing that they found scar tissue in my brain.I also have A-fib. I was fine and not having any problems. In my physical in 1998 Doc took 4 different strips on diferent EKG machines. All 4 came back whti th same information. That informations was ad irregular heart beat. It took years but that irggular changed to iintermitant a-fib with intermitant a-flutter. Now it is A-fib with intermitant A-flutter.. So yes I do know a person can have several different things happening to him. As for not wanting your son to not take medications. Which would you rather have a som taking medications. Or a son whose seizures get worse and gets more damage to his brain. You posted he had a grand mal seizure and he had pitet mal (absence seizures). Well the seizures can and do get stronger as times go by. I didn't say anything about the wierd feelings I had in my right hand. I had been written up in classes for day dreaming in class. Those wierd feelings were focal seizures AKA partial seizures. Some of those day dreams were absence seizures since they were blips i time. Those wierd feelings and day dreams got stronger and faster and closer together. It wasn't until I had the grand mal that some of them were put together. I was put on medications and they slowed down. There are many people that have epilepsy that grow out of it. Some are controlled and have had no seizures for years.As for medications and your son. Do you read all the fine print on all medications you but over the counter?? If not then go read some of them. As for side effects happening.. They do happen and you may read all kinds of posts about them and almost all will be about how bad the medication is. Well having been in some drug studies for new medications I know how those side effects get put together. I also know that those side effects happen to 5-8% of the people taking it. You will not be seeing posts from the people whos medications are working great and they are having no problems. In other words no posts will come from 65-92% of the people takig it and using it. I hope this hepls Joe

Welcome LacyAs for the diagnosis being fast. All it takes to diagnosis epilepsy is 2 seizures. Those you have posted. The ER doctors ran tests that some ER's don't run. The EEG is a test to show were the electrical output comes from in your brain. In most cases they can and do come back normal. I had 20-25 come back normal before having one in which I fell asleep in. That came back with abnormalities (seizure activity).The MRI shows everything in the brainThe EKG shows the heart rate and BPM. If teh beat is not right they  will then have a echocardiogram musch like the MRI it shows the heart. I had epilepsy since 1963 and the diagnosis was made in 1964. All my tests came back normal. Including the neuro-angeogram (MRI of the 1960's). When the EEG came back with abnormalities it showed the neurologists where the activity was comming from. They then looked closer at the neuro-angram. By doing that they found scar tissue in my brain.I also have A-fib. I was fine and not having any problems. In my physical in 1998 Doc took 4 different strips on diferent EKG machines. All 4 came back whti th same information. That informations was ad irregular heart beat. It took years but that irggular changed to iintermitant a-fib with intermitant a-flutter. Now it is A-fib with intermitant A-flutter.. So yes I do know a person can have several different things happening to him. As for not wanting your son to not take medications. Which would you rather have a som taking medications. Or a son whose seizures get worse and gets more damage to his brain. You posted he had a grand mal seizure and he had pitet mal (absence seizures). Well the seizures can and do get stronger as times go by. I didn't say anything about the wierd feelings I had in my right hand. I had been written up in classes for day dreaming in class. Those wierd feelings were focal seizures AKA partial seizures. Some of those day dreams were absence seizures since they were blips i time. Those wierd feelings and day dreams got stronger and faster and closer together. It wasn't until I had the grand mal that some of them were put together. I was put on medications and they slowed down. There are many people that have epilepsy that grow out of it. Some are controlled and have had no seizures for years.As for medications and your son. Do you read all the fine print on all medications you but over the counter?? If not then go read some of them. As for side effects happening.. They do happen and you may read all kinds of posts about them and almost all will be about how bad the medication is. Well having been in some drug studies for new medications I know how those side effects get put together. I also know that those side effects happen to 5-8% of the people taking it. You will not be seeing posts from the people whos medications are working great and they are having no problems. In other words no posts will come from 65-92% of the people takig it and using it. I hope this hepls Joe

Welcome LacyAs for the diagnosis being fast. All it takes to diagnosis epilepsy is 2 seizures. Those you have posted. The ER doctors ran tests that some ER's don't run. The EEG is a test to show were the electrical output comes from in your brain. In most cases they can and do come back normal. I had 20-25 come back normal before having one in which I fell asleep in. That came back with abnormalities (seizure activity).The MRI shows everything in the brainThe EKG shows the heart rate and BPM. If teh beat is not right they will then have a echocardiogram musch like the MRI it shows the heart. I had epilepsy since 1963 and the diagnosis was made in 1964. All my tests came back normal. Including the neuro-angeogram (MRI of the 1960's). When the EEG came back with abnormalities it showed the neurologists where the activity was comming from. They then looked closer at the neuro-angram. By doing that they found scar tissue in my brain.I also have A-fib. I was fine and not having any problems. In my physical in 1998 Doc took 4 different strips on diferent EKG machines. All 4 came back whti th same information. That informations was ad irregular heart beat. It took years but that irggular changed to iintermitant a-fib with intermitant a-flutter. Now it is A-fib with intermitant A-flutter.. So yes I do know a person can have several different things happening to him. As for not wanting your son to not take medications. Which would you rather have a som taking medications. Or a son whose seizures get worse and gets more damage to his brain. You posted he had a grand mal seizure and he had pitet mal (absence seizures). Well the seizures can and do get stronger as times go by. I didn't say anything about the wierd feelings I had in my right hand. I had been written up in classes for day dreaming in class. Those wierd feelings were focal seizures AKA partial seizures. Some of those day dreams were absence seizures since they were blips i time. Those wierd feelings and day dreams got stronger and faster and closer together. It wasn't until I had the grand mal that some of them were put together. I was put on medications and they slowed down. There are many people that have epilepsy that grow out of it. Some are controlled and have had no seizures for years.As for medications and your son. Do you read all the fine print on all medications you but over the counter?? If not then go read some of them. As for side effects happening.. They do happen and you may read all kinds of posts about them and almost all will be about how bad the medication is. Well having been in some drug studies for new medications I know how those side effects get put together. I also know that those side effects happen to 5-8% of the people taking it. You will not be seeing posts from the people whos medications are working great and they are having no problems. In other words no posts will come from 65-92% of the people takig it and using it. I hope this hepls Joe

My advice would be if you are

Submitted by Anonymous on Sat, 2014-12-20 - 03:29

My advice would be if you are having feelings like you are not getting the care you deserve -- if you are unsure -- seek a second opinion. I did just that after almost a year with the same neuro and am now quite pleased with my daughter's care at a Level 4 epilepsy center -- by an epileptologist. I know it is hard to accept the medication route at first, but it beats the alternative. My girl is on generic Keppra and Onfi. She also has only had two seizures in a span of 14 months. But our case is a little different because she stops breathing, and the first one was a prolonged seizure that was life-threatening.My daughter has syncope as a feature of her seizures -- she loses consciousness and has a long post-ictal period. I know with her first seizure, syncope was noted. She even fell when trying to find her seat in class (and ultimately could not remember where she sat) last year during that first seizure.I hope you get good news from the cardiologist. I would ask more questions about the issues deemed medically irrelevant, but that's just me. Best wishes to you and yours.