Hello,
I am new and so glad I found this site. I have a 9 year old son that was diagnosed in March of 2008 with absence seizures. It has been a long road of doctors telling me "he is just a boy, he'll catch up" and "you are over reacting" to being told it is ADD/ADHD, then no, it is auditory processing, to now finally the comfirmation that it is epilepsy. We have tried Keppra and Zarontin which did not work. He is now on Lamictal, and his seizures continue to get worse - up to about 100 a day now lasting from 2-10 seconds. I am so upset that he conitues to decline right infront of my eyes. We did try neurofeedback and his condition continued to get worse. Out of pure frustration, I took him to a holistic nurse practioner who talked alot about nutrition and my son's signs of possible celiac disease and malabsorbtion issues. I was in shock, yet, so anxious to see what his blood and urine tests show. The nurse practioner was so refreshing to talk to and gave me the feeling that there are other things that need to be explored with my son's condition. The neurologists would only mention that I may want to try the ketogenic diet, but never talked about food allergies. Whenever I would ask them about other causes to his seizures, I was told that many of the causes are not known. Does this story sound familiar to anyone and has anyone had success with decreasing or even elimination seizures with diet?? Anyone's experiences with celiac disease? My son is suffering in his own silence and I promised him that his mommy is not giving up until we get some answers and he feels better. He has been in the hospital for V EEG's 3 times in the past 10 months with no improvement. HELP!
I do have some form of seizure history in my family. My father was on phenobarbirtal, dilantin and tegretol for 35 years and would still have break though grand mals. Amazingly, after a series of grand mal seizures and then going into a comma, a neurologist walked into the ICU and observed one of my dad's seizures and told us that he does not have epilepsy, but orthostatic hypotensive syncopy. He has been off all of his meds since 1989 and has not had 1 seizure since. My son's neurologist is not sure if my father did indeed have epilepsy or he was mis-diagnosed for all this time. He had his first grand mal at 18. I have no idea if my father's condition is related to my sons.
Thank you in advance for anyone's help or perspective.
I am new and so glad I found this site. I have a 9 year old son that was diagnosed in March of 2008 with absence seizures. It has been a long road of doctors telling me "he is just a boy, he'll catch up" and "you are over reacting" to being told it is ADD/ADHD, then no, it is auditory processing, to now finally the comfirmation that it is epilepsy. We have tried Keppra and Zarontin which did not work. He is now on Lamictal, and his seizures continue to get worse - up to about 100 a day now lasting from 2-10 seconds. I am so upset that he conitues to decline right infront of my eyes. We did try neurofeedback and his condition continued to get worse. Out of pure frustration, I took him to a holistic nurse practioner who talked alot about nutrition and my son's signs of possible celiac disease and malabsorbtion issues. I was in shock, yet, so anxious to see what his blood and urine tests show. The nurse practioner was so refreshing to talk to and gave me the feeling that there are other things that need to be explored with my son's condition. The neurologists would only mention that I may want to try the ketogenic diet, but never talked about food allergies. Whenever I would ask them about other causes to his seizures, I was told that many of the causes are not known. Does this story sound familiar to anyone and has anyone had success with decreasing or even elimination seizures with diet?? Anyone's experiences with celiac disease? My son is suffering in his own silence and I promised him that his mommy is not giving up until we get some answers and he feels better. He has been in the hospital for V EEG's 3 times in the past 10 months with no improvement. HELP!
I do have some form of seizure history in my family. My father was on phenobarbirtal, dilantin and tegretol for 35 years and would still have break though grand mals. Amazingly, after a series of grand mal seizures and then going into a comma, a neurologist walked into the ICU and observed one of my dad's seizures and told us that he does not have epilepsy, but orthostatic hypotensive syncopy. He has been off all of his meds since 1989 and has not had 1 seizure since. My son's neurologist is not sure if my father did indeed have epilepsy or he was mis-diagnosed for all this time. He had his first grand mal at 18. I have no idea if my father's condition is related to my sons.
Thank you in advance for anyone's help or perspective.
I agree with six pack. It's hard to tell if your father's and your son's seizures are related. As for celiac, yes, there are several people here who have celiac, and several who have used diet to decrease and even rid themselves or children of seizures. Try talking to Robbin and Living Fruity. While some have used high protein diets, others have gone vegetarian.
