Last night I got to go to the city and meet with other parents and caregivers who have a child/adult with Lennox-Gastaut Syndrome. It was nice, just a small group of people but hopefully it will grow.
What is LGS?
Well Lennox-Gastaut syndrome is a rare and severe form of childhood onset epilepsy. The characteristics of the syndrome include; Frequent seizures, multiple seizure types, a resistance to medications, mental retardation, regression, behaviour issues and an abnormal EEG with slow spike and wave discharges.
Some of the known causes are Brain injuries associated with pregnancy or birth, developmental malformations, a history of Infantile spasms and in 30-35% of cases, no cause can be found.
For more information you can contact www.lgsfoundation.org
LGS was first mentioned on an EEG report of Finnian's when he was just 24 mths old. At that stage he had been diagnosed with Infantile Spasms and other seizures. The IS was basically controlled with the Sabril but it was the other types of seizures that we were trying our best to control with medications. We would just get one type of seizure under control when another would pop up and the cycle would continue try another medication and add on to what he was already on. We started the Keto diet in December 07 and with in a week his head drops had stopped that was a huge improvement compared to a head drop every 3-5 minutes while he was awake. We are still on the keto diet with 3 medications he is not seizure free and probably will never be. We have seen regression when his seizures were off the wall and once under control we have seen improvements but it takes time , along time for them to relearn the skills they have lost and sometimes they never regain the skills they had take for example Finnian no longer has any speech and his vision is nonexistence.
Many people think oh he just has seizures and with medication it will be controlled not in Finnian's case. I have ben asked "Do you give him all of his medications?" What a stupid question are you an idiot do you think its nice to see your child have seizures, scream for hours on end, have them puking for days and have them in constant motion because they might not be have a seizure that you can see but they are having electrical storms that are affecting some part of their brain that is causing them to have thoes symptoms. Seizure suck.
By the way Thank You Christine for the lovely night and the dinner.
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