Psuedo seizure or not in my 13 year old!

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kmc3076

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I have been told that my 13 year old has psuedo seizures and I don't know what to do. There are so many things that are not typical in psuedo seizures that she is going through. I was told at first that she has complex partial seizures and now this. How do I help her think that she is going to be ok when I don't even know what is going with her? I have four children and it is taking its toll on all of us. These seizures only started 2 years ago, and since then her whole life has changed. Does anyone know anything about these psuedo seizures? I just want her to be ok, and have a normal life.
 
Welcome Kmc3076.
That must be tough. I dont have kids myself, but I just left "teen-ville" last year, so I know how hard that must be.

complex partials are one of several types of seizures. its not uncommon for people to have several different types. I have absence seizures, simple partials, complex paritals, myoclonics, and tonic clonics. I may have had a drop serizure *atonic* not too long ago.

So her dual diagnosis isnt unusual. You say that they think she has pseudo seizures? did they say why? or what they thought was causing it? complex partials can generalize into tonic clonic *grand mal* seizures, and these are scary. There will be a period of confusion, exhaustion, mixed emotions and out of character behavior after those, on a slightly more pronounced aspect than after a complex partial.

Is she taking any medication for this? did they say what they thought caused the complex partials? has she had a grand mal yet?
 
Hey kmc3076 --

As Rae says, find out why the docs think your daughter is having pseudo seizures (usually called Psychogenic Non-Epileptic Seizures, or PNES). A lack of a positive EEG does NOT a rule out that the seizures are epileptic in origin. It's worth getting a second or third opinion, since treatment will vary depending on the diagnosis.

PNES is usually considered a post-traumatic stress response, and is primarily treated with counseling therapy.

Epileptic seizures are usually treated with medications, as well as with lifestyle changes to minimize any triggers. Sometimes triggers are hormonal (do your daughter's seizures happen at the same time of the month?) Or they can be dietary, triggered by unbalanced nutrition, low blood sugar, or a food allergy. Sometimes lack of sleep can be a trigger. See if you and your daughter can keep a journal tracking the seizures (when they happen, what happens, how long they last). This journal will be helpful to show the doctors, and can also help you identify potential triggers.

Best,
Nakamova
 
I definitely second the seizure diary. Keeping track of what she experiences and when, what happens before and what happens after will provide you and the doctors a lot of information -- for you potential triggers, and the usefulness of certain meds, vitamins, minerals and foods, for them a record of exactly what happens, which will help with reaching a proper diagnosis.

If you would like to have more involvement in working towards a better quality of life for your daughter check out Proactive Prescriptions for Epilepsy If her seizures are E-related, they should help, if not, they won't hurt.
 
KMC - I was told the same thing a few months following Rebecca's seizures. I had to consider it. Yet after thorough research and discussions with her therapist, we both concluded that it was something more that was causing her seizures. The meds actually made her seizures worse. We tried four different meds, and finally I said enough. We have been working with nutrition and the changes have been dramatic. Not instant, but over time it has been very positive. Food intolerances can cause neurological changes, and blood sugar imbalance can too.

I learned after 3.5 yrs that Rebecca has hypoglycemia, and this contributes to her seizures. I know it can also cause psychological abnormalities too.

Keep an open mind, but don't take the diagnosis if in your heart, it is wrong. UCLA was adamant that it was PNES, but now I know otherwise. I just don't use my energy to go backwards. I use it only to move forward and help my daughter reach total health.

A journal / calendar is a good place to begin.
 
kmc...I can't help but note where you are from...if you don't mind my asking, where was her diagnoses made at?

Some of the best clinics/ doctors in the country can get it wrong, caseloads are heavy, they confuse patients or the doctor you see is too new...if you are not happy or satisfied with the diagnosis then I sould suggest seeking out another opinion/ opinions. That you received conflicting diagnoses is cause for concern.

I hope you enjoy the support the forum provides...it is a wealth of information and you will find people here from all walks of life with all types of E. It is the most cary group of people I have ever found when it comes to this affliction.
 
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