Diagnosing Epilepsy

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My son started to have seizures last year. They diagnosed him with a seizure disorder then I looked into epilepsy and after several months I wanted to know if my son was epileptic. The dr didn't know ? Eventually after seeing several neurologist in the hospital they have us the diagnosis that he's epileptic.. I wanted to know what the cause was. He had a EEG done and MRI done at the very beginning . He started with seizures in July 2013 . He was admitted to the Phoenix children's hospital during that time and that's when the imaging was done.. They said that he showed signs that his brain was "misfiring" more on the left than the right . That was more than a year ago.. He is now seeing a epileptic specialist but I'm still in the dark as to what type if seizures he's having (since he's had several different kinds) he is now on two different meds, trileptal and lamectal . I'm trying to get more answers from the dr but he says that the EEG done a year ago ( not by him)before having alot more seizures he's happy with. We still don't know what's really going on. It seems to be that they just want him to be put on more and more medication and without a reason behind why he's having seizures . He hit his head and needed stitches in December of 2011. No imaging was done and he hit bricks on the back of the left side if his head. Shortly after he was on the hospital for pancreatitis ( the were confused as to why) then in February he had his first seizure although we didn't know it was a seizure . He had another one and again we didn't know it was a seizure because he just seemed to be dreaming and would wake up fine but then in July for 4 days he had seizures this was when we realized what they were since they got worse . That's when he was admitted to the hospital.. I'm just trying to do my own research since all drs seem to tell me is " give him this medication with all it's side affects and learn to live with him having epilepsy" I will not accept this .. U would like to know a reason and the type. Please any input is appreciated . GOD BLESS Judy

Comments

Re: Diagnosing Epilepsy

Submitted by Masterjen on Fri, 2013-08-16 - 14:43

There are ways to determine what type of seizures your son is having. One is for you to very carefully describe to the doctors what happens when he has a seizure. Another way is to set up a video camera or web-cam in his room to record any seizures he has at night. Another way is to have him admitted to the seizure investigation unit where he will be hooked up to an EEG 24/7 for a given period of time in order to record his brain-wave activity and obtain visual recordings of any seizures he has. From this the doctors should be able to tell you what kind of seizure(s) your son has.

You can also ask that your son have a diagnostic profile done, to determine if he has any other medical condition that may have predisposed him to seizures (eg. faulty gene, metabolic disorder, or what have you). You say that no cause was found for your son's pancreatitis - maybe this was the first sign of a medical condition in which seizures can also occur. But be prepared to hear that your son's epilepsy has no known cause, as this is common. A physical trauma, such as a serious illness (pancreatitis) or head injury can be a trigger for seizures to start, when perhaps your son was predisposed to developing seizures all along. I of course don't know if this was the case for your son; just giving food for thought.

As for taking medication, it is important to control seizures for a number of reasons: your son's safety (he cannot constantly be under your supervision), helping him become self-confident and independent, and also there is the theory (up for debate) that uncontrolled seizures can lower the seizure threshold and make one more predisposed to having seizures.

Always remember to take a clear llist of questions with you when you see your son's doctors, and take notes as they are discussing things with you. It will help keep your mind on track. Bring a second adult along as well, to be an additional pair of ears to hear what is being said.

Good luck!

There are ways to determine what type of seizures your son is having.  One is for you to very carefully describe to the doctors what happens when he has a seizure.  Another way is to set up a video camera or web-cam in his room to record any seizures he has at night.  Another way is to have him admitted to the seizure investigation unit where he will be hooked up to an EEG 24/7 for a given period of time in order to record his brain-wave activity and obtain visual recordings of any seizures he has.  From this the doctors should be able to tell you what kind of seizure(s) your son has. You can also ask that your son have a diagnostic profile done, to determine if he has any other medical condition that may have predisposed him to seizures (eg. faulty gene, metabolic disorder, or what have you).  You say that no cause was found for your son's pancreatitis - maybe this was the first sign of a medical condition in which seizures can also occur.  But be prepared to hear that your son's epilepsy has no known cause, as this is common.  A physical trauma, such as a serious illness (pancreatitis) or head injury can be a trigger for seizures to start, when perhaps your son was predisposed to developing seizures all along.  I of course don't know if this was the case for your son; just giving food for thought. As for taking medication, it is important to control seizures for a number of reasons: your son's safety (he cannot constantly be under your supervision), helping him become self-confident and independent, and also there is the theory (up for debate) that uncontrolled seizures can lower the seizure threshold and make one more predisposed to having seizures.   Always remember to take a clear llist of questions with you when you see your son's doctors, and take notes as they are discussing things with you.  It will help keep your mind on track.  Bring a second adult along as well, to be an additional pair of ears to hear what is being said.  Good luck!  

There are ways to determine what type of seizures your son is having. One is for you to very carefully describe to the doctors what happens when he has a seizure. Another way is to set up a video camera or web-cam in his room to record any seizures he has at night. Another way is to have him admitted to the seizure investigation unit where he will be hooked up to an EEG 24/7 for a given period of time in order to record his brain-wave activity and obtain visual recordings of any seizures he has. From this the doctors should be able to tell you what kind of seizure(s) your son has.

You can also ask that your son have a diagnostic profile done, to determine if he has any other medical condition that may have predisposed him to seizures (eg. faulty gene, metabolic disorder, or what have you). You say that no cause was found for your son's pancreatitis - maybe this was the first sign of a medical condition in which seizures can also occur. But be prepared to hear that your son's epilepsy has no known cause, as this is common. A physical trauma, such as a serious illness (pancreatitis) or head injury can be a trigger for seizures to start, when perhaps your son was predisposed to developing seizures all along. I of course don't know if this was the case for your son; just giving food for thought.

As for taking medication, it is important to control seizures for a number of reasons: your son's safety (he cannot constantly be under your supervision), helping him become self-confident and independent, and also there is the theory (up for debate) that uncontrolled seizures can lower the seizure threshold and make one more predisposed to having seizures.

Always remember to take a clear llist of questions with you when you see your son's doctors, and take notes as they are discussing things with you. It will help keep your mind on track. Bring a second adult along as well, to be an additional pair of ears to hear what is being said.

Good luck!

Re: Diagnosing Epilepsy

Submitted by Cure4Tarin on Sat, 2013-08-17 - 10:59

Thank you so much for the quick response. I have several recordings of his seizures, they all have similarities but yet the Dr says they are all different and cannot pinpoint the exact type. I have been told about him being admitted and and having him taken off his meds so they can induce a seizure but they say that they will not do this until he fails two medicine's. I just don't understand why they would not do more imaging if that was in the very beginning since then the seizures are more often and more aggressive. But I will definitely look into to see if I can get more answers. Thank u again

Re: Diagnosing Epilepsy

Submitted by EmmasMommy on Fri, 2013-08-23 - 15:28

Hi,

I have a few questions for you - if I have missed the answers above, please forgive me.

1. How old is your son? How old was he when he had his first known seizure?

2. Could you describe for us what his seizures "look like?" My daughter has focal seizures with secondary generalization which include her left side being paralyzed for hours after a seizure (seizures average from 18-45 minutes plus she has them in her sleep). She has CONSTANT misfiring on the right side of her brain (even when NOT having a seizure) and has never had a normal EEG.

3. What kind of meds is he on and did his seizures change at all after certain meds (get better/worse, etc)?

My daughter tested positive for a scn1a mutation but supposedly is has an "unknown significance." I think it's very significant but not enough people have been tested yet to find the "link."

Hi,

I have a few questions for you - if I have missed the answers above, please forgive me.

1. How old is your son? How old was he when he had his first known seizure?

2. Could you describe for us what his seizures "look like?" My daughter has focal seizures with secondary generalization which include her left side being paralyzed for hours after a seizure (seizures average from 18-45 minutes plus she has them in her sleep). She has CONSTANT misfiring on the right side of her brain (even when NOT having a seizure) and has never had a normal EEG.

3. What kind of meds is he on and did his seizures change at all after certain meds (get better/worse, etc)?

My daughter tested positive for a scn1a mutation but supposedly is has an "unknown significance." I think it's very significant but not enough people have been tested yet to find the "link."

Diagnosing Epilepsy

Comments

Re: Diagnosing Epilepsy

Submitted by Masterjen on Fri, 2013-08-16 - 14:43

Re: Diagnosing Epilepsy

Submitted by Cure4Tarin on Sat, 2013-08-17 - 10:59

Re: Diagnosing Epilepsy

Submitted by EmmasMommy on Fri, 2013-08-23 - 15:28

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