I am Proud of my girl,
she was diagnosed with a Seizure disorder (C.A.E Childhood Absence
Epilepsy) over 2 years ago. Every time we spoke of it she'd walk away or
cover her ears :( she just didn't want to hear it. But she wanted to
raise money and awareness. But I don't think she fully came to terms
with her disorder,what it is,how to treat her and how it really affects
her.
She's Brilliant in dance, she can remember a whole dance/steps/routines in a matter of minutes, but when it comes to remembering numbers, retaining info or spelling her brain fails her. It takes her longer to figure things out and she has to read something over and over to really get it, but she does it.
We can only speculate what these seizures are doing to her Brain and even more so what the medications (Depakote and Keppra) are doing to her too :( We already know the Depakote was making her hair come out (though not as bad as it could have been) it lowered her Blood Platelet Counts last Summer and weakened her Muscle Tone.
This past week we started talking about "Seashells for Seizures" The Fundraising Awareness Project that we've been working on. She wants to go beyond Seashells, maybe Sheep (LOL Colleen/Greer and Tina) hey it starts with an "S" too and baby sheep are comforting and cute. Maybe even some Bracelets in Purple the Color of Epilepsy Awareness.... She wants to maybe even start a Blog!
And just last night on Twitter she Tweeted- "I have Epilepsy"
A big step for her considering she used to say I have this "thing".
January 15th, 2012 was her 2 year Anniversary of her 1st Seizure. In 20 days, June 15th (Yes eerily 5 months to the day after we had her 1 yr Anni she had her second Outward) we Celebrate her 2nd Anniversary of being Seizure Free (meaning no OUTWARD Seizures requiring an Emergency Hospital visit) Every year that passes that she does not have an Outward Seizure is a step Closer to a seizure Free Life!(Of course no seizure activities on her EEGs Help too!)
I am so proud to have this talented Little Burrito as my Daughter!
Absence Seizure - the occurrence of an abrupt, transient loss or impairment of consciousness (which is not subsequently remembered), sometimes with light twitching, fluttering eyelids, etc.; common in petit mal epilepsy
Absence Seizures are commonly mistaken for Day Dreaming.
What is Childhood Absence Epilepsy?
Absence seizures are generalized seizures that occur in school-aged children usually between the ages of 5 and 9. (Baylee is @ 2 years behind in Growth which may explain her getting C.A.E at the age of 11) Sometimes CAE can be inherited, but it can also occur as a sporadic event. Typical absence seizures consist of sudden cessation of movement, staring, and sometimes blinking. Sometimes, there may be a mild loss of body tone, causing the child to lean forwards or backwards slightly. Unlike other types of seizures, absence seizures occur without an aura or warning. When diagnosing CAE, typical absence seizures need to be differentiated from atypical absence seizures which can occur at an earlier age. An EEG of a child with CAE will show a typical pattern known as 3-Hz generalized spike and wave complexes.
Many children with CAE have normal neurological examinations and intellectual abilities. However, some children may have developmental and intellectual impairments and may have other types of seizures including, but not limited to, tonic clonic seizures. (Baylee's 2nd Outward Seizure was Tonic Clonic lasting about 10 minutes it was SCARY!!!!)
She's Brilliant in dance, she can remember a whole dance/steps/routines in a matter of minutes, but when it comes to remembering numbers, retaining info or spelling her brain fails her. It takes her longer to figure things out and she has to read something over and over to really get it, but she does it.
We can only speculate what these seizures are doing to her Brain and even more so what the medications (Depakote and Keppra) are doing to her too :( We already know the Depakote was making her hair come out (though not as bad as it could have been) it lowered her Blood Platelet Counts last Summer and weakened her Muscle Tone.
This past week we started talking about "Seashells for Seizures" The Fundraising Awareness Project that we've been working on. She wants to go beyond Seashells, maybe Sheep (LOL Colleen/Greer and Tina) hey it starts with an "S" too and baby sheep are comforting and cute. Maybe even some Bracelets in Purple the Color of Epilepsy Awareness.... She wants to maybe even start a Blog!
And just last night on Twitter she Tweeted- "I have Epilepsy"
A big step for her considering she used to say I have this "thing".
January 15th, 2012 was her 2 year Anniversary of her 1st Seizure. In 20 days, June 15th (Yes eerily 5 months to the day after we had her 1 yr Anni she had her second Outward) we Celebrate her 2nd Anniversary of being Seizure Free (meaning no OUTWARD Seizures requiring an Emergency Hospital visit) Every year that passes that she does not have an Outward Seizure is a step Closer to a seizure Free Life!(Of course no seizure activities on her EEGs Help too!)
I am so proud to have this talented Little Burrito as my Daughter!
Absence Seizure - the occurrence of an abrupt, transient loss or impairment of consciousness (which is not subsequently remembered), sometimes with light twitching, fluttering eyelids, etc.; common in petit mal epilepsy
Absence Seizures are commonly mistaken for Day Dreaming.
What is Childhood Absence Epilepsy?
Absence seizures are generalized seizures that occur in school-aged children usually between the ages of 5 and 9. (Baylee is @ 2 years behind in Growth which may explain her getting C.A.E at the age of 11) Sometimes CAE can be inherited, but it can also occur as a sporadic event. Typical absence seizures consist of sudden cessation of movement, staring, and sometimes blinking. Sometimes, there may be a mild loss of body tone, causing the child to lean forwards or backwards slightly. Unlike other types of seizures, absence seizures occur without an aura or warning. When diagnosing CAE, typical absence seizures need to be differentiated from atypical absence seizures which can occur at an earlier age. An EEG of a child with CAE will show a typical pattern known as 3-Hz generalized spike and wave complexes.
Many children with CAE have normal neurological examinations and intellectual abilities. However, some children may have developmental and intellectual impairments and may have other types of seizures including, but not limited to, tonic clonic seizures. (Baylee's 2nd Outward Seizure was Tonic Clonic lasting about 10 minutes it was SCARY!!!!)
No comments:
Post a Comment