Is This Diagnosis Right?

CDC funded page

Not a CDC funded Page

Hello. My 14-year-old son was just diagnosed and I am worried that maybe it is more psychosomatic or blood sugar or stress related, yet with the MRI results am feeling they are right. So, briefly: Lots of stress in our family; M growing quite a bit; school stress; two or maybe three seizures - first not positive that's what it was, late January, second, a grand mal lasting five+ minutes in late March, third, another grand mal same length in late September; eeg normal, CT scan normal, bloodwork normal; then the MRI - shows an incomplete right hippocampal inversion. Doctor's say that, with the IHI and the two-three seizures, even though far apart, it is definitely epilepsy. We are not trying to avoid a diagnosis we don't want, but worry about meds and so much else if diagnosis is wrong (or if right, actually). Does anyone have any thoughts, experience or suggestions? Thank you.

Comments

welcomeWelllllllllllll at 14

Submitted by just_joe on Mon, 2016-11-14 - 17:15

welcomeWelllllllllllll at 14 I went thru a lot of things. You posted 3 seizures and they were grand mal. Have you research the other types of seizures yet?? Have you ever seen him looking like he was day dreaming? Those daydreams could be absence or focal seizures (petite mal)As for the EEG it is a test showing the electrical output coming from the brain. If it was a short EEG (30-45 minutes) they do not always see all the electrical activity there. I had 20-25 different EEG's that came back normal. I went thru a battery of tests and the last test done was another eeg which was longer in which I fell asleep in. That one showed spikes or waves aka seizure activity or epileptiform. They are also called abnormalities. So if they had seen those the eeg would have been abnormal. When the neurologists saw those on my eeg they then went back to the MRI of the 60's and looked closer in the area the abnormalities came from and they found scar tissue on the left lobes of my brain.psychosomatic seizures do happen the name has been used for many years. But the real name is Psychogenic You can find out more using PNES.Now what they found in the MRI and the neurologist shows he has epilepsy. What starts a seizure is an electrical impulse hitting wrong in the brain causing a chain reaction. Well for me that scar tissue causes electrical impulses to hit wrong. Your sons IHI is doing what my scar tissue is doing. All it takes is 2 seizures to diagnose epilepsy.not trying to avoid a diagnosis we don't want, but worry about meds and so much else if diagnosis is wrong (or if right, actually) If meds have been prescribed use them as directed. 2 times a day is not 8am and 6pm... Those times need to be 12 hours apart unless the doctor says otherwise. It takes time for his body to get used to the medication about 2-3 depending on the medication. In those weeks the therapeutic levels are building. So taking the medications correctly means keeping the therapeutic levels where they should be. Amy Jo made some good points so like she posted there are other things that can be looked at. Surgery, different procedure and diets that can help. Your son is no different today then he was last year, Well except he is a tear older.I hope this helps and the neurologists can get him seizure free.Joe

welcomeWelllllllllllll at 14 I went thru a lot of things. You posted 3 seizures and they were grand mal. Have you research the other types of seizures yet?? Have you ever seen him looking like he was day dreaming? Those daydreams could be absence or focal seizures (petite mal)As for the EEG it is a test showing the electrical output coming from the brain. If it was a short EEG (30-45 minutes) they do not always see all the electrical activity there. I had 20-25 different EEG's that came back normal. I went thru a battery of tests and the last test done was another eeg which was longer in which I fell asleep in. That one showed spikes or waves aka seizure activity or epileptiform. They are also called abnormalities. So if they had seen those the eeg would have been abnormal. When the neurologists saw those on my eeg they then went back to the MRI of the 60's and looked closer in the area the abnormalities came from and they found scar tissue on the left lobes of my brain.psychosomatic seizures do happen the name has been used for many years. But the real name is Psychogenic You can find out more using PNES.Now what they found in the MRI and the neurologist shows he has epilepsy. What starts a seizure is an electrical impulse hitting wrong in the brain causing a chain reaction. Well for me that scar tissue causes electrical impulses to hit wrong. Your sons IHI is doing what my scar tissue is doing. All it takes is 2 seizures to diagnose epilepsy.not trying to avoid a diagnosis we don't want, but worry about meds and so much else if diagnosis is wrong (or if right, actually)  If meds have been prescribed use them as directed. 2 times a day is not 8am and 6pm... Those times need to be 12 hours apart unless the doctor says otherwise. It takes time for his body to get used to the medication about 2-3 depending on the medication. In those weeks the therapeutic levels are building. So taking the medications correctly means keeping the therapeutic levels where they should be.  Amy Jo made some good points so like she posted there are other things that can be looked at. Surgery, different procedure and diets that can help. Your son is no different today then he was last year, Well except he is a tear older.I hope this helps and the neurologists can get him seizure free.Joe

welcomeWelllllllllllll at 14 I went thru a lot of things. You posted 3 seizures and they were grand mal. Have you research the other types of seizures yet?? Have you ever seen him looking like he was day dreaming? Those daydreams could be absence or focal seizures (petite mal)As for the EEG it is a test showing the electrical output coming from the brain. If it was a short EEG (30-45 minutes) they do not always see all the electrical activity there. I had 20-25 different EEG's that came back normal. I went thru a battery of tests and the last test done was another eeg which was longer in which I fell asleep in. That one showed spikes or waves aka seizure activity or epileptiform. They are also called abnormalities. So if they had seen those the eeg would have been abnormal. When the neurologists saw those on my eeg they then went back to the MRI of the 60's and looked closer in the area the abnormalities came from and they found scar tissue on the left lobes of my brain.psychosomatic seizures do happen the name has been used for many years. But the real name is Psychogenic You can find out more using PNES.Now what they found in the MRI and the neurologist shows he has epilepsy. What starts a seizure is an electrical impulse hitting wrong in the brain causing a chain reaction. Well for me that scar tissue causes electrical impulses to hit wrong. Your sons IHI is doing what my scar tissue is doing. All it takes is 2 seizures to diagnose epilepsy.not trying to avoid a diagnosis we don't want, but worry about meds and so much else if diagnosis is wrong (or if right, actually) If meds have been prescribed use them as directed. 2 times a day is not 8am and 6pm... Those times need to be 12 hours apart unless the doctor says otherwise. It takes time for his body to get used to the medication about 2-3 depending on the medication. In those weeks the therapeutic levels are building. So taking the medications correctly means keeping the therapeutic levels where they should be. Amy Jo made some good points so like she posted there are other things that can be looked at. Surgery, different procedure and diets that can help. Your son is no different today then he was last year, Well except he is a tear older.I hope this helps and the neurologists can get him seizure free.Joe

Is This Diagnosis Right?

Comments

welcomeWelllllllllllll at 14

Submitted by just_joe on Mon, 2016-11-14 - 17:15

Sign Up for Emails