epilepsy and studdering?

RE: epilepsy and studdering?

Submitted by WashkuhnR on Wed, 2004-08-04 - 18:59

This is not uncommon. I have regular seziures, but many people have what your son has. Call the Minnesota epilepsy clinic (651) 220-5290 and they will tell you the exact name and should be able to give you information on it. WashkuhnR

RE: epilepsy and studdering?

Submitted by mexican_fire on Thu, 2004-08-05 - 13:55

Hi Nick's mom~~

Sounds like either some type of Simle or Complex Partial seizure, or the motor part that goes along with Absence/Petite Mal seizures.

I had those as a kid, and had jerking or twitching in my face, sometimes my mouth, and I would stare into space and everything I was doing got suspended until the seizure was over.  I was also known to tap the desk with my hand or fingers during the seizure.  They lasted about 10-25 seconds with me.

Today, I still have those, but the symptomology has simmered down, and I just stare, and suspend all activities.  Once in a rare while I will get twitching at the corners of my mouth.  It wasn't caught until recently, because all it looked like was zoning out.

I also have another type called partial seizures and as you have described your son's behavior, it could be this, too.  Complex Partial seizures.  Kids rarely have Simple Partial seizures, but they can.  I did, and that all started when I was 5 years old.  I have some very bizarre mannerisms during my CPs.  I grunt, wander, have garbled up speech, and have a seizure pattern/habit of scrambling thigs during it.  I knock things over etc.  I am left in a fog for the following 2-3 days afterwards, much of which is spent sleeping it off.  They ususally last me, on average about 3 minutes.

But those seizure can cause tic like movements in the shoulders, face, mouth, and any other place they can find.

Next, an MRI does NOT show ANY kind of seizure activity to get a DX of epilepsy from.  It shows the structures of the brain and any abnormalities that might be in it.  The EEG is used to catch epilepsy.  Every seizure, seizure type, epilepsy, and epilepsy syndrome all have distinct wave patterns that show up, either inter-ictally, or during the seizure. 

I would go back and ask to have him retested with an EEG to get a firm DX.

I had 3 EEGs and ALL three of them came back abnormal for temporal lobe epilepsy.  Also my VEEG was abnormal 4 of the 8 days I was in there, due to me having seizures on 4 different days.  I even had a day or two that had some abnormal activity with no seizure.  That is referred to as inter-ictal activity and is commonly seen in people with seizure disorders between seizures.

They even caught 2 other types of seizures that no one even knew I had.  Absence, and Myoclonic.

I have been on more than 5 drugs since I was placed on Tegretol 4 years ago for suspected seizures.

I have taken: Tegretol XR, Tegretol, Chewable Tegretol, Ativan, Topamax, and Carbatrol.  I have been on Neurontin at 3600 mgs for 1 1/2 years, and Depakote ER, which recently was increased last week to 1000 mgs after being at 500 mgs for a long time.

Combo works to some extent.  I still have seizures at a random pace.  No reason for their presence at unwanted times or places.

I had to go through 1 1/2 years of non-stop testing for the epilspy before I got the formal DX, but even though some of it was unpleasant, it was worth it to finally figure this out, and be able to treat it.

You can't really DX E on the first try, there is generally some more testing to do, just to confirm it.

They usually have to wait until the suspected person has at least 2 or even 3 seizures before medicating them.  My doctor didn't medicate me until I had had 4 seizures.

I couldn't get the correct testing while living in Ohio, because my Ohio Medicaid didn't cover it.  It only covered doc office visits, and meds.  So, all I got was a CT scan that her office ate the cost of.

It wasn't until I got to Phoenix that I was able to get all the proper testing done for it, and it turned up positive anyway.

Good luck, and please keep me posted on this.  I am curious to know what the turn out is and if he has E what type it is, and what meds they put him on.

Nancy

TLE with other seizure types

Grand Mal, Absence, Myoclonic, Simple and Complex Partial seizures