Newbie

[Jessyca]

Hi everyone!

I'm new to this site and new to epilepsy. My 2 year old, Lucy, was diagnosed with epilepsy. She has generalized absence and petit mal seizures. You probably wouldn't know she had an illness if you had just met her. She seems perfectly "normal" (whatever that actual means) until she has a seizure or a staring spell. She also bites herself during a seizure. So far she has not only bitten her tongue, but her arms and toes. Does anyone else know of this problem? Lucy also has sensitivity to bright lights (mostly false lighting like grocery store lightening) and loud sounds. She also has repeated behavior such as repeating words several times in a row. Lucy also has banged her head repeatedly after a seizure on a hard surface. She will also go into a fit of rage after a seizure, but my educated guess says that it’s due to the confusion and pain seizures can bring. The only two things that calm her down are warm milk (bottle) and a warm bath.
Lucy is currently taking Keppra twice daily at 1.5ml and Diastat for seizures that last longer than 15 minutes.

I moderate a website in her honor, please feel free to come and leave feedback.For those of you who are interested, my facebook account is listed under the "about me" section of her site. (I'll have all my links posted to my profile)

It was nice introducing my daughter and hopefully I will gain insight and help as I help Lucy on her journey.

 

[epileric]

Hi & Welcome Jessyca

I was also born with partial seizures though I had my first tonic/clonic when I was 18. I have to say that one habit I have (never thought of it as being connected to my seizures-meds maybe) is that I also tend to repeat a sentence (or 2) when talking, especially if it's something I feel strongly or am anxious about. I'm more likely to do it when I'm post-ictal but I still might do it when I haven't had a seizure at all that day.

Meanwhile make yourself at home, there are a lot of parents of children with epilepsy here so you're definitely in good company.

 

[lindinig]

Hi Jessyca, my 13 year old son also suffers from absense seizures. We know when he has one because he is confused and euphoric for about 5 days after a seizure (or seizure cluster). He never bangs his head, or goes into a rage. I suppose from a 2-year-old's point of view, if she gets an extreme headache after a seizure, it could cause her to feel angry as she probably cannot articulate the pain she's feeling. My son only got one headache (that I know of) after a seizure, and it lasted the duration of his post-ictal phase (4 days). His seizures are mostly under control through Depakote. He has also been going to neurofeedback sessions in hopes of one day reducing/eliminating his medicine. Tomorrow will mark 10 weeks since his last seizure. Stress/anxiety is a trigger for his seizures, so I won't be doing any celebrating until after he's been in school for about a month (when the anxiety would have worn off).

 

[Nakamova]

Hi Jessyca, welcome!

CWE is a great place for info and support. You might want to check out The Nursery, CWE's forum for parents (if you haven't already).

Best,
Nakamova

 

[Rae1889]

Hi everyone!

I'm new to this site and new to epilepsy. My 2 year old, Lucy, was diagnosed with epilepsy. She has generalized absence and petit mal seizures. You probably wouldn't know she had an illness if you had just met her. She seems perfectly "normal" (whatever that actual means) until she has a seizure or a staring spell.

generalized absence sounds new to me. do you mean that her absence spell turns into a grand mal? because an absence is a type of petit mal

She also bites herself during a seizure. So far she has not only bitten her tongue, but her arms and toes. Does anyone else know of this problem?

Most people bite their tongue during a grand mal (aka tonic clonic), and this can be pretty serious sometimes and she can draw blood. finger and toe biting sound like complex partial seizures to me. which are also a type of petit mal

Lucy also has sensitivity to bright lights (mostly false lighting like grocery store lightening) and loud sounds.

Yup, me too. things like high pitch or the deep bass you can feel in your chest. also startling noises can kick someone into a seizure.

She also has repeated behavior such as repeating words several times in a row. Lucy also has banged her head repeatedly after a seizure on a hard surface. .

repeating words can be a simple partial or aura. head banging sounds like complex partial

She will also go into a fit of rage after a seizure, but my educated guess says that it’s due to the confusion and pain seizures can bring. Lucy is currently taking Keppra twice daily at 1.5ml and Diastat for seizures that last longer than 15 minutes.

rage is a side effect of keppra, nicknamed "kepprage" talk to her talk about this, as if it doesnt seem to slow or reduce seizures, plus this side effect can cause great emotional responses.