KidPower
Seizure Disorders
Several of the KidPower members' children have seizure disorders or epilepsy along with cerebral palsy or other disabilities. We have decided to dedicate an entire page on the KidPower site to these disorders so that members and visitors can have easy access to this information.
April's son, Kyle, was diagnosed with complex partial seizures in November 1998. We are going to share Kyle's seizure history, which begins at 15 months when his first febrile seizure occurred. These lasted until he was 2 1/2 years old. He had a total of four in that time period and his EEG showed slight seizure activity at that time.
For a year his family did not notice any seizures or anything out of the ordinary. Then in January of 1997, Kyle started having episodes where he would wake up and his eyes would go to the right. He could not control his eyes or focus for a few minutes. He would then be ill for a few hours and sleep the rest of the day. He had two more similar episodes in February and April of 1997 before his mother called the neurologist and had an EEG and MRI done. Both were unchanged from his first scans so his neurologist decided his episodes must be migraines.
Since migraines do run in the family no one really questioned the diagnosis too much, though his mother was not totally convinced it was accurate. These (migraines) increased in frequency and changed their presentation over the next 22 months.
After the first 3 episodes Kyle no longer had trouble with his eyes when he would have a seizure. For awhile these episodes consisted of him waking up with a headache and being ill and sleeping most of the day. Eventually Kyle would just complain about his stomach hurting and the frequency increased to about once a week.
The day before Kyle had his complex partial seizure episode he woke up in the van on the way home and vomited. When the family arrived home he slept for most of the afternoon. He then went to bed as normal that night and woke his dad up at 7:25 the next morning, November 8, 1998, when he vomited in his sleep.
Kyle's right arm, which is his side affected by the cerebral palsy, was twitching and he could not respond. This went on for a little over 20 minutes until he finally looked up at his mother and said "hi momma". They were in the ER by this time. He then started coming in and out of seizures that lasted a minute or two. He did this 3 or 4 times before the hospital staff gave him enough valium to stop them and started Kyle on Dilantin.
He has since had only a couple of break through simple partials--consisting of his head and/or stomach hurting and him sleeping for large portions of the day. His family now believes that the migraines were actually simple partial seizures that led up to his complex partial seizure episode.
Kyle is now 12. He took Dilantin for about 5 years, but we had to discontinue using it because of severe gum overgrowth. Kyle has been on Depakote for the last two years and his gums have returned to normal. Both meds have worked well for him.
AntiEleptic Drug Pregnancy Registry
Critical Issues in the Use of Antiepileptic Drugs
Diagnosis and management of epilepsy
Early Seizure Onset and Brain Development: The Emerging Picture
Electrical Status Epilepticus During Sleep
Emerging Strategies for Early Seizure Control
Epilepsy-L Support Mailing List
Epilepsy Therapy: Challenges of Adverse Events
Epilepsy in Young Children--Several Child Epilepsy Stories and Support Mailing List
Febrile Seizures and Mesial Temporal Sclerosis
God Helps Those Who Help Themselves
Kayla's Story--includes Message Board and Chat room
Ketogenic Diet
Packard Children's Hospital
Stanford University Medical Center
Ketogenic Diet discussion group
Mesial Temporal Lobe Epilepsy More Common Than Suspected
North Texas Hospital Center for Epilepsy Treatment
NutriGenie Ketogenic Diet Meal Planner
Paws with a Cause--Seizure Response Dogs
Toolkit for Parents of Teens with Epilepsy
Understanding Seizures and Epilepsy
The VNS from a Patient's Point of View
VNS Support--Vagus Nerve Stimulator Support
WARNINGS ABOUT MEDICATIONS AND INTERACTIONS
People taking Zonegran, especially children, should be watched closely for signs of decreased sweating and increased body temperature, especially in warm or hot weather. --Warning taken from the Epilepsy Foundation website.
Antihistimes and/or Decongestants can lower a child's seizure threshold. You can use Children's Nasalcrom Spray for allergies. You can also use Claritin because its molecules are to large to cross the blood/brain barrier.
Tegretol(Carbamazepine) can reach toxic levels when the antibiotic, erythromycin, is used for an infection. Always inform your doctor of any medications your child is on before they prescribe another.
Watch for rashes, especially within the first couple of weeks, when your child begins a seizure medication. Be especially cautious with Lamictal and always immediately report any suspected rash to your doctor.
Dilantin(Phenytoin) can cause problems with gum overgrowth and sometimes discolors teeth. Children on Dilantin need to have very good oral hygene.
Tegretol has been known to cause problems with the liver and blood levels and liver fuction tests should be performed about every 6 months.
Phenobarbital can cause learning problems and slow development.
Generic seizure medications are not all equivalent. This can cause the blood levels of these meds to fluctuate. Please consult your pharmacist before using generic medications.
All antiseizure medications can cause personality changes and sometimes even depression, especially phenobarbital.
All antiseizure medications have side effects. We have listed a few warnings above on the most common side effects experienced. These are not all the possible side effects for these drugs. You need to be informed about these and make the choice that is best for your child after you have reviewed all the facts. A book highly recommended by KidPower is below. If you would like to purchase it from amazon.com just click on the picture. This book has wonderful, easy to understand information that every parent with a child with epilepsy needs to know.
We also recommend:
© 1998-2005 by KidPower Family Support Resource