KevinsMom
08-25-2006, 10:54 PM
Hello...I'm Kevins Mom Dawn...Today he was diagnosed with complex partial seizure disorder.Is anyone familiar with this? He has also been recently dianosed moderately autistic.
It has taken us four plus years to finally get doctors to listen to us that something was wrong with our son.
How does one get this disorder???complex seizure disorder?
It has taken us four plus years to finally get doctors to listen to us that something was wrong with our son.
How does one get this disorder???complex seizure disorder?
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tkdmom96
08-26-2006, 01:33 AM
Hi Dawn,
Welcome to the boards! Our daughter was diagnosed at 8 months old with CP seizures. She is now 18.
I would like to share some of the info on these type of seizures with you, but I would also like to know if you are going to check back. I have been on the boards here (Epilepsy ONLY) for 4 years and have posted lengthy responses to many first time posts, only to find that the "new" person never came back to look at it. Or at least I assume, since they never responded back after my post.
I have learned a lot over the years with Complex Partial seizures, meds, treatment options etc.
Here are a few questions for you:
What were Kevin's symptoms? Actions?
What testing did Kevin have done to diagnose the Complex Partials?
What type of doctor are you seeing for Kevin?
What medication is he taking?
I'll check back in a couple of days to look for your post. Again welcome and there is a lot of good info here, but please keep a few things in mind: people may have the same type of seizures but have different symptoms, different luck/help/reactions/tolerances with medications, and because we are all unique there are no "set" ways as to how things work with seizures.
Please become educated, ask questions and remember that your doctor works FOR you and that YOU are your child's advocate. If your doctor doesn't take the time, it's time to move on and find one that does. Someone that you and your child are comfortable with, especially with Kevin's diagnosis of moderate autism. His comfort is important.
Take care,
Vicki
Welcome to the boards! Our daughter was diagnosed at 8 months old with CP seizures. She is now 18.
I would like to share some of the info on these type of seizures with you, but I would also like to know if you are going to check back. I have been on the boards here (Epilepsy ONLY) for 4 years and have posted lengthy responses to many first time posts, only to find that the "new" person never came back to look at it. Or at least I assume, since they never responded back after my post.
I have learned a lot over the years with Complex Partial seizures, meds, treatment options etc.
Here are a few questions for you:
What were Kevin's symptoms? Actions?
What testing did Kevin have done to diagnose the Complex Partials?
What type of doctor are you seeing for Kevin?
What medication is he taking?
I'll check back in a couple of days to look for your post. Again welcome and there is a lot of good info here, but please keep a few things in mind: people may have the same type of seizures but have different symptoms, different luck/help/reactions/tolerances with medications, and because we are all unique there are no "set" ways as to how things work with seizures.
Please become educated, ask questions and remember that your doctor works FOR you and that YOU are your child's advocate. If your doctor doesn't take the time, it's time to move on and find one that does. Someone that you and your child are comfortable with, especially with Kevin's diagnosis of moderate autism. His comfort is important.
Take care,
Vicki
skibum
08-28-2006, 10:22 AM
Vicki, I don't know if Dawn will reply, but I was recently diagnosed with complex partial seziure disorder. I have have three mri's, two with contrast, all negitive. I have had three eeg's, one positive for temporal lobe seziure spikes, one was a forthy eight hour eeg and it was negative. You name the test and in the last year they've given it to me, both neuro and cardio. I'm rather a late on set case at 43. But boy has this really screwed up my life. I'm taking Keppra and Topomax. Topomax is the main drug. I had a major sezuire recently which they seem to be coming more often and more severe. I generally, just seem to faint and stiffen. I get an aura before hand or at least use to. I seems if the meds do anything, they take away my warning system. Anything you can do to tell me would help. Thanks, Elaine
neurowreck
08-28-2006, 10:37 PM
Have had CPS for at least 20 years. Sometimes (most of the time) people don't really know what causes seizures. Some are related to injuries (even without loss of consciousness), fevers when little (mesiotemporal sclerosis, or scarring of an area of the brain that triggers CPS), etc. Or, sometimes, there's no obvious cause.
Keep a seizure diary- ask him if he feels anything before they start (auras are actually simple partial seizures that are warnings for CPS- for some people, they have the simple partials, and not progress to complex partials). Track sleeping, eating, infections, anything abnormal that might happen before the seizures. The biggest help to the doc is information. Also helps when choosing meds.
Keep a seizure diary- ask him if he feels anything before they start (auras are actually simple partial seizures that are warnings for CPS- for some people, they have the simple partials, and not progress to complex partials). Track sleeping, eating, infections, anything abnormal that might happen before the seizures. The biggest help to the doc is information. Also helps when choosing meds.
tkdmom96
08-28-2006, 10:45 PM
Hi Elaine,
Welcome to the boards! I don't have time to reply tonight, but will try tomorrow early afternoon. I have to get my house ready for a realtor's open house at 10:30 am tomorrow.
Actually, your seizure onset may be connected to the changes in hormones due to menopause. Has the doc talked to you about that? Have you had hormone levels checked? There is a specialty doctor called a NEUROENDOCRINOLOGIST that deals with seizures is women due to hormones.
There is ALOT of research going on in the field of Neurology right now. We were told that if someone had to be diagnosed with a neuro disorder, now is a good time in the history of medicine. A comment from one of our docs that we see at Children's Hospital of WI.
Look for my post tomorrow and in the mean time, look up seizures and the connection to menopause.
Take care,
Vicki
Welcome to the boards! I don't have time to reply tonight, but will try tomorrow early afternoon. I have to get my house ready for a realtor's open house at 10:30 am tomorrow.
Actually, your seizure onset may be connected to the changes in hormones due to menopause. Has the doc talked to you about that? Have you had hormone levels checked? There is a specialty doctor called a NEUROENDOCRINOLOGIST that deals with seizures is women due to hormones.
There is ALOT of research going on in the field of Neurology right now. We were told that if someone had to be diagnosed with a neuro disorder, now is a good time in the history of medicine. A comment from one of our docs that we see at Children's Hospital of WI.
Look for my post tomorrow and in the mean time, look up seizures and the connection to menopause.
Take care,
Vicki
neurowreck
08-31-2006, 12:37 AM
Skibum- have you been checked for neurocardiogenic syncope? Your situation sounds like what I went through when I was diagnosed with dysautonomia (autonomic dysfunction- brain doesn't tell the heart to beat fast enough or crank up the blood pressure, so ya keel over).....meds help, and they're not horrible to take (been 10 years with that diagnosis).
Sorry to divert....
Sorry to divert....
skibum
09-07-2006, 08:08 AM
Hi Vicki, Funny, you should mention menopause because when i bring it up every one looks at me like I'm crazy. I too am selling my good luck. Hope to hear from you soon. Elaine
skibum
09-07-2006, 08:14 AM
Dear Neurowreck, Yes, I was tested for neurocardiogenic sycope and was diagnosed with that as well but the doctors believe that the because of the results of the EEG it is a seizure disorder. Apparently it is not uncommon to have both things going on at once. The vagus nerve can trigger fainting spells and or seizures, hence, the surgery VNS. But all the information is driving me crazy. Thanks for your input, Elaine
tkdmom96
09-07-2006, 05:35 PM
Hi Elaine, I'm sorry, but I haven't been able to get back here to leave a post for you yet. I'm in the process of a HORRIBLE divorce (after 19 years of marriage-husband is having an affair with one of our employees, who's a year OLDER than me AND also married with 2 highschool children the same ages as OURS!). So I have been quite consumed with it all.
I will try tomorrow...
Again, I'm sorry.
Vicki
I will try tomorrow...
Again, I'm sorry.
Vicki