Annie's Epilepsy Journey
Epilepsy was the first diagnosis that Annebelle got in the NICU, she was diagnosed with focal Epilepsy and immediately put on anti-epileptic medication. Thankfully her seizures were under control before we left the hospital and stayed under control for a couple years. Around Annie's first birthday we noticed she was having "jack-knife" seizures that were clustering -at her worst she was having 30-50 seizures a day- Annie was diagnosed with Infantile spasms (IS) and tried (and failed) multiple medications. Finally after over a year we found a medication that worked and her IS stopped for good. Our good fortune was short lived and unfortunately her focal epilepsy came back after two seizure free months. Annie's neurologist adjusted her meds, increasing doses and adding new ones. after no success and 5-6 months of seizures we decided with her doctors to get her a vagul nerve simulator to stop her seizures. We believe that on top of the focal seizures she is also having other types and her neurologist suspects she has a seizure disorder called Lennox-Gastaut Syndrome.
Focal EpilepsyA focal seizure begins on side of the brain, in Annie's case the left side. Annie has a change in her level of awareness but does not pass out (while some people have focal seizures with no lose of awareness)
Annebelle's focal seizures last about 30 seconds and afterwards she's out of it for another minute or so. |
Infantile Spasms**IF YOU SUSPECT YOUR CHILD HAS INFANTILE SPASMS GO TO AN EMERGENCY ROOM AS SOON AS POSSIBLE.
Infantile spasms (IS) is a rare seizure disorder that occurs in young children, usually under one year of age. The average age of onset is around four months, but some children may experience spasms as early as one month. A few children may begin as late as two years. Only about 2,500 children in the US are diagnosed each year with IS. It often has a very subtle appearance so it is difficult for parents to recognize that it is a serious problem. When most people think of a seizure disorder, they may think of someone falling to the ground and having all-over body convulsions. It is very obvious when that happens that there is something wrong. A young child having infantile spasms, on the other hand, may just have little head drops that do not appear to be anything serious. However, it is a much more serious seizure disorder than the generalized convulsion. Not only is it difficult for the parent to realize that this is a seizure disorder, it is also challenging for pediatricians. Infantile spasms are so uncommon that most pediatricians will see only one or two IS cases during all the years of practice. Also IS often looks similar to common disorders such as a normal startle reflex, colic, or reflux. It is very important to recognize that a child has IS as soon as it begins because:
- Child Neurology Foundation |
Lennox-Gastaut SyndromeLennox-Gastaut syndrome patients experience multiple types of seizures- including tonic-clonic seizures, drop seizures, absent seizures and others while not responding to epilepsy medications. Intellectual development is usually impaired in patients with LGS but not always and in 25% of cases no cause is known. LGS is an extremely rare form of epilepsy- only accounting for 2-5% of children with epilepsy- and usually persists into adult years.
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Vagul Nerve StimulationA Vagus nerve stimulator is a device that prevents seizures by sending pulses of electrical energy to the brain. A VNS is implanted under the skin in your chest and connects to the Vagul nerve in the neck, sometimes called a "pacemaker for the brain." Patients with a VNS are not aware when the device is operating and live life normally. VNS is used in conjunction with anti-epileptic medications.
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