Epilepsy Foundation

Grimins
  • Female
  • Elmira, NY
  • United States
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Grimins's Friends

  • Alysse
  • sharon
  • Amanda Reed
  • Erika
  • babs
  • Katie's Mom
  • My02Angels
  • Elizabeth, Emma's mommy
  • Gailinsmom
  • Adamsmom
  • jjbeck
 

Grimins's Page

Latest Activity

Grimins replied to EF Admin's discussion Back-to-school Advice
"I always made an appointment to meet with all of my daughter's teachers (middle school) to discuss her epilepsy, what her seizures look like, what her seizure plan is, what medications she takes, side effects she has, possible side effects to…"
Jul 30, 2012
Grimins replied to Keisha King's discussion Daughter throws up medicine....any suggetions to help her with taking it?
"If you mix it in something just mix it in a small amount...so she can take the entire thing in one spoonful. Autumn used to take the brand name liquid zarontin, it was suppose to be raspberry flavored but Autumn said it tasted terrible...worse than…"
Jun 15, 2012
Grimins replied to brenda's discussion BRE....seizure free for almost two years/weaning off Keppra???
"I just wanted to wish you good luck on your med wean! Let us know how things go.   I was hoping to see some replies to your thread...my 14 yo daughter will be weaning off Keppra (500 mg  in am, 750 mg in the pm) in September. She was dx…"
Apr 18, 2012
Grimins replied to Kristen Bostic's discussion In need of help and support.
"You can try giving the zarontin with food (yogurt, crackers, etc). That helped my daughter. And my daughter said the liquid zarontin tasted horrible. She was really happy when the dosage was upped enough for her to take a gel cap.   Autumn was…"
Mar 31, 2012
Grimins replied to 3girls4us's discussion First Dose of Ethusuximide/Zarontin
"Glad to her dose two went better! Hopefully Madilyn is well controlled on the zarontin and then outgrows them! I always hate when they get sick right before or right after a med dose...it makes it so complicated.   The taste of the liquid…"
Jan 1, 2012
Grimins replied to Emily- Aggie's mom's discussion Know of any books FOR KIDS about kids with seizures?
"Becky the Brave...deals with generalized tonic clonic seizures. I used this one help explain my daughter's epilepsy to my sons who were then 8 and 6. I also read it to my daycare kids to help explain why Autumn takes medicine all the time."
Jan 1, 2012
Grimins replied to 3girls4us's discussion First Dose of Ethusuximide/Zarontin
"I usually just read now and don't comment much but since no one has replied...   I would have called my neuro's office to see if they wanted me to give any more meds or just wait until the next dose. And did you give her anything to…"
Jan 1, 2012
Grimins replied to Vanessa's discussion Brand Names and Insurance Companies
"We have BCBS. When we went to fill the first Script for Keppra, the pharmacist asked me brand or generic, I said I don't know ask the Neurologist what he wants. The neuro wanted brand, they denied it, he appealed and since she had just had a…"
Sep 1, 2011
Grimins replied to Teri Payne's discussion Ethosuximide (Zarontin) - Any insights
"Autumn is 13 and has been on it for almost 2 years, she takes 250 mg twice a day(morning and afternoon) brand name, along with Keppra. She had some long cases of hiccups and was hyper in the beginning but after a few weeks she adjusted. No side…"
Mar 31, 2011
Grimins replied to Jennifer Reif's discussion Any Positive Keppra Stories?
"Autumn, 13 yo, has had success with Keppra and Zarontin. we are 21 months seizure free (absence and GTCs). She has no side effects. For a couple of weeks after we increased her dosage in the beginning she had a sore neck but it went away.…"
Mar 15, 2011
MrsLinkgetter replied to Grimins's discussion Happy 12th Birthday Autumn
"Happy Birthday, Autumn!! Hope you have a very special day!"
Jan 4, 2010
babs replied to Grimins's discussion Happy 12th Birthday Autumn
"Oh yes, I agree - A good wish for a much better year! I'm so happy to hear she's doing so well sz-wise! Happy 12th birthday Autumn! Have fun celebrating : )!!!!"
Jan 4, 2010
Grimins replied to harriett's discussion Shawn is 18 months seizure-free! :)
"What fantastic and encouraging news! Congrats and thanks for sharing it!"
Dec 31, 2009
Irishmum replied to Grimins's discussion Second Medication Mishap in two months
"Hope she has no adverse effects..."
Dec 16, 2009
Ann R. replied to Grimins's discussion Second Medication Mishap in two months
"I changed to two different pill boxes for AM and PM in two different locations....it was just too easy to make a mistake otherwise!"
Dec 15, 2009
Grimins replied to babs's discussion Woke up to another sz and she's still no better 9 days later -
"Hey Babs, I don't know what state your in...but have you tried looking into Easter Seals or the local United Cerebral Palsy fund to see if maybe htey can help you find a stander for Rach? I came across another Marcel's Way but it was…"
Dec 9, 2009

Profile Information

About Autumn

We recieved a phone call from the school about 8:00am on March 12, 2009 informing us that they believed Autumn, our 11 year old, had a seizure on her way to class and was in the process of being transported via ambulance to the local emergency room. We beat the ambulance to the ER. We got led right back to her as she came in and it was hard to believe anything had happened, she was ht esame kid I sent to school that morning, bright, alert and responsive. THey did blood work, an EKG and an CT scan and all came back normal. We were told she had a 50/50 chance of ever having another seizure. They had us come in a week later for an EEG. They found absence seizures on her EEG. They called and rescheduled our appointment with the neurologist for the next business day shortly after we got home. We hadn't even had the MRI yet that was scheduled for Tuesday. It was a Friday so it made for a loooong weekend. Her neurologist chose to medicate her. He starts her on Keppra.

The next morning before the MRI she had another TC in the front seat of the car. We went to the ER, they still did the MRI, and it was also normal.

Six days later we get another call from the school, Autumn had another TC in math class. The next morning she has a TC at our breakfast table. The neurologist doubles her nighttime dose, adds zarontin.

Two weeks goes by she has a mild TC on the couch watching TV at 3:00pm. Stay the course and do bloodwork. 3 hours later she has another mild TC on the couch. HE ups her night time Keppra dose.

We go 56 days seizure free...but then she has a breakthrough absence seizure followed 20 minutes later by an unwitnessed seizure even though an adult is not more than 15 feet away from her, and everyone was home (Mom, Dad, adult big brother, two younger brothers). She fell off the couch, did not convulse, and was very postictal. It was her postictal behavior (crying, confused) and her youngest brother then tellign me he found her face down on the hardwood floor that brought it to our attention. Her neuro ups her nighttime dose and later her even ing dose of zarontin.

We are currently a little over 2 months seizure free : D She also survived going through rabies treatment for a bat in her bedroom with no seizures:D

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At 8:45pm on June 7, 2009, Adamsmom said…
Hi Grimins!

Just wanted to let you know that I will be thinking of you all on Tuesday and hoping all goes well with the EEG for your son!

Hugs,
Donna
 
 
 

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