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Dr. Andrew Rynne
MD
Dr. Andrew Rynne

Family Physician

Exp 50 years

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Suggest Treatment For Lennox Sindrome

MY GRANDCHILD AGE 14 HAS LENNOX GASTAUT SINDROME,STARTED CONVULTIONS AT 7MONTHS,.CURRENTLY USING KEPPRA 1000MG TWICE DAILY,EPILEM 500 MG TWICE DAILY.RIVITRIL MORNING 1MG.EVENING 2 MG . MIDDAY 2MG.RISPERDAL 3MG EVENING.LIMICTAL 25 MG TWICE DAILY.
TRILEPTAL 300 MG increased to 600mg mornings AND 600MG EVENING.5ML FELBAMATE (TELOXA) TWICE DAILY.IT IS THE 2ND DAY ON INCREASED DOSAGE OF 600 MG TRILEPTAL.SHE IS A WALKING ZOMBI, I TAKE CARE OF HER,BUT GOES TO SCHOOL DURING DAY TIME.SHE SLEEPS MOST OF HER DAY AT NURSERY SCHOOL.SHE HAS BRAIN DAMAGE,SLOWER AS A 2 YEAR OLD.PLEASE HELP !!!!!!!!!!!!!!!
Mon, 20 Jan 2014
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Neurologist, Surgical 's  Response
Hi. Im so sorry to hear about your grandchild. My name is Vinay. Let me see if I can help you understand what is going on here.

Lennox Gastaut Syndrome (LGS) is a developmental problem with the CNS. Most of the time we don't really know what causes it. But many a time it is associated with certain kinds of Brain malformations that developed from birth (we call them cortical dysplasias), hypoxic injury at birth (not enough oxygen to the brain at birth), infections, trauma and a rare disease called Tuberous Sclerosis.

Any case of Symptomatic LGS that I have come across has come into the really "tough to treat" category. The seizures are resistant to Anti Epileptic drugs and alot of the time we end up having to give a lot of steroid medications (like prednisone) to control the seizures. Unfortunately it takes a lot of 'Trial & Error' to figure out that perfect combination of drugs that controls the symptoms and most of the time the patient and me have to settle for something that is far short of perfect control of the seizures.

Given that these seizures are a part of life for these children.. the statistics on mortality are staggering.. most of them die of accidents... secondary to the seizures..

That makes me believe that the family has to adopt a kind of "ready for anything" stance. You have to evaluate the home and make sure that if she DOES have an witnessed seizure.. there is nothing around that she can hurt herself on and she will be found relatively quickly.. The School and School Bus environments are important to look into as well. The more accidents you can prevent, then better her overall prognosis.

All her caregivers and all regular visitors to the home have to know how to deal with a witnessed seizure and should know basic first aid.

I don't want to address the different medications she is on for this problem as that is an issue that can ONLY be dealt with on the ground by her Neurologist with an ability to examine her and look at her lab reports. Suffice it to say. I expect that these meds will be changing on a regular basis until the seizures are controlled.

I do so hope this information helps. Feel free to contact me through HCM if you think I can be of further service
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Suggest Treatment For Lennox Sindrome

Hi. Im so sorry to hear about your grandchild. My name is Vinay. Let me see if I can help you understand what is going on here. Lennox Gastaut Syndrome (LGS) is a developmental problem with the CNS. Most of the time we don t really know what causes it. But many a time it is associated with certain kinds of Brain malformations that developed from birth (we call them cortical dysplasias), hypoxic injury at birth (not enough oxygen to the brain at birth), infections, trauma and a rare disease called Tuberous Sclerosis. Any case of Symptomatic LGS that I have come across has come into the really tough to treat category. The seizures are resistant to Anti Epileptic drugs and alot of the time we end up having to give a lot of steroid medications (like prednisone) to control the seizures. Unfortunately it takes a lot of Trial & Error to figure out that perfect combination of drugs that controls the symptoms and most of the time the patient and me have to settle for something that is far short of perfect control of the seizures. Given that these seizures are a part of life for these children.. the statistics on mortality are staggering.. most of them die of accidents... secondary to the seizures.. That makes me believe that the family has to adopt a kind of ready for anything stance. You have to evaluate the home and make sure that if she DOES have an witnessed seizure.. there is nothing around that she can hurt herself on and she will be found relatively quickly.. The School and School Bus environments are important to look into as well. The more accidents you can prevent, then better her overall prognosis. All her caregivers and all regular visitors to the home have to know how to deal with a witnessed seizure and should know basic first aid. I don t want to address the different medications she is on for this problem as that is an issue that can ONLY be dealt with on the ground by her Neurologist with an ability to examine her and look at her lab reports. Suffice it to say. I expect that these meds will be changing on a regular basis until the seizures are controlled. I do so hope this information helps. Feel free to contact me through HCM if you think I can be of further service