Introducing myself...

[Macy'sMom]

Hello...new to all of this. Over Christmas break, my 12 year old daughter began having seizures (well, we thought that's when it started). The first of which was very scary for us...we had no idea what was happening. An ambulance ride, three blood tests, two trips to the ER, two neurologist, two EEG's, and a MRI later....she has been diagnosed with Epilepsy. We have since learned that she has probably had a few that we didn't know about. It all started with her hand twitching, like a muscle spasm; however, she also had to grand mal.
She is now on Tegretol (sp?) and doing great, but we still watch her very carefully. Now, we are just trying to learn as much as we can.

 

[epileric]

Welcome MM

Make yourself at home. I also have partial seizures (both kinds) and am on nothing but Tegretol.

I hope it helps control her seizures. You also might want to check out the "nursery" on this site. Lots of other parents that I have no doubt will relate to what you're going through.

 

[Nakamova]

Hi Macy'sMom, welcome!

I hope you feel free to check out the archives and all the forums here at CWE, and post any questions comments as the mood strikes. It's great that you are being proactive and getting info about your daughter's seizures. You might find this thread interesting: http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/
(In the thread, RobinN writes about using nutrition and neurofeedback to help control her daughter's seizures. Her daughter was 13 when they started.).

Best,
Nakamova

 

[Macy'sMom]

thank you! I will be poking around all over this site...so helpful to talk to people and read other stories

 

[Shirl]

thank you! I will be poking around all over this site...so helpful to talk to people and read other stories

Hi Macy's Mom,

Welcome. I am fairly new here also. I have already met some wonderful people and feel such support. My son Jon will soon be 13 and he has been having seizures all his life. After many years of complete control, we are struggling to find the right medications for Jon to have control again.

 

[Endless]

Hi, MacysMom,

Welcome! I'm so glad you found us.

I read your journey to diagnosis and then the right medication. It is usually a long and winding path, sometimes taking years. Hang in there.

Here in the forum there are lots of parents of children with epilepsy.

Did the doctors say what part of the brain they think the seizures are starting in? If she is awake but has twitching, that's a partial seizure (in only part of the brain). Then when she loses consciousness and convulses that's a generalized seizure (full brain). Here are links describing the different types of seizures:
http://www.epilepsy.com/epilepsy/types_seizures
http://www.epilepsyfoundation.org/about/types/types/index.cfm
http://en.wikipedia.org/wiki/Seizure_types

 

[Macy'sMom]

Endless,
That's the weird part....and of course we are still learning all the vocabulary, but she's had partials on both sides (in both hands)...so both sides of the brain. All her tests...EEG and MRI have come back "normal" ....how is that possible?? Shouldn't the MRI show something?? I'm really so confused....glad that the results have come back normal, but not knowing where these seizures stem from is really disturbing.
We have another appointment with the neurologist on the 9th, so maybe he can answer some of those questions. In the mean time, I'm extremely thankful that the medication is working for her....from what I've been reading, it takes some people a long time to figure out the right medication and dose.

 

[Nakamova]

Partial seizures can be especially tricky to catch on EEGs and MRIs. They often originate too deep in the brain to show up. In these cases the neurologists will often rely on the clinical evidence (i.e. the actual physical sensations or symptoms) in order to make the diagnosis. And if the med seems to help, then that can be another confirmation of the diagnosis.

It's great that your daughter is doing well on the Tegretol. Let us know how things go on the 9th.

 

[Endless]

Partials may not show up because they may be happening too deep in the brain to pick up.

If she is having generalized siezures (tonic-clonic) that should show up on the EEG, even if it's inbetween seizures. If that's not showing up then they should be relentlessly chasing down what's happening to her. There may be an underlying disease causing seizure-like symptoms. This is called physiologic non-epileptic seizures.

This may be the case for me - after almost 2 years of dinking around with seizure meds and a diagnosis of epilepsy, the docs have found out I have IIH (Idiopathic Intracranial Hypertension - fluid pressure that is too high in the brain). I have fluid pressing in on my brain and on the nerves in my neck and back where the cerebral spinal fluid (CSF) resides, and this can definitely cause seizures, but they aren't epileptic seizures.

There are other causes, too - cardiac, migraines, hypoglycemia, Paroxysmal kinesiogenic dyskinesia, sleep disorders, etc.

I guess the message here is if an EEG is normal, the docs should be running every test known to humankind to try to find an underlying cause. Especially if it is generalized seizures and the eeg is normal. And they have to keep looking. It took almost 2 years for them to find my IIH.

Hang in there. It's a long winding road, but eventually you'll get there and her seizures will be under control.

http://www.livestrong.com/article/53281-types-nonepileptic-seizures/
http://www.patient.co.uk/doctor/Non-Epileptic-Attack-Disorder-(NEAD).htm