Hi all,
I am back on this website to hopefully to help others get through the tough times that we experienced. This website was definitely helpful to us.
Our daughter, Stella, developed absence seizures about 2 months before her 5th birthday. Within a week, we had figured out from our own research online that she was probably having absence seizures. We visited a neurologist, had the EEG diagnostic tests, and it was confirmed. She had already had spinal surgery for syringomyelia when she was 4 months old, so we thought it might be related to that. She had an MRI and all looked normal. We then learned about the available treatments for absence seizures and the choice (drugs) was incredibly depressing.
After figuring out that there was really no definitive evidence that having these seizures produced long-term risks to the brain, we decided to hold off on using drugs and look into other possible treatments. During this period, we had to make sure she wasn't ever on high playground equipment, riding bikes, or any other activity that a 5-10 second seizure would put her at risk of an accident.
We began to research what environmental triggers had ever been anecdotally or scientifically linked to seizures. The overwhelming conclusion was food. So, we put Stella on the GARD diet. We didn't see any improvement for the first month. The frequency of her seizures seemed to just cycle between good days (less than 10 seizures) and bad days (over 50 seizures). However, this cycling actually would give us moments of hope that something was working and that helped us stay on our goal of not going to plan B (drugs).
Our pediatrician suggested that we give Stella a blood test (Immunolabs) to measure for food sensitivities/allergies. She had told us of another family who took the test and after following the diet changes their boy's autism symptoms improved dramatically. So, Stella's results listed about 15 foods that she should avoid, including gluten, dairy, corn, soy, various nuts, and a few other items. We immediately eliminated these foods from her diet. About two weeks later we consulted a pediatrician who was an allergy specialist, and we had Stella tested using the skin prick allergy test. Many of the same foods that we had already started to eliminate came up as allergens on this test as well.
Well, to cut this story short (I might add more later), Stella followed this "elimination-4 day rotation" diet very strictly with absolutely no "cheating." She was resistant at various times as their was a learning process in finding the right foods, preparing the foods in a way that they were still tasty, but she was a trooper and didn't complain very much. After about 2 months we started to see consistent improvement, finally observing her last seizure on March 18 of 2008. We had mini-celebrations at the 1 week seizure-free stage, 1-month, 50 days, 100 days, and finally 365 days. She is still following the diet yet we have slowly reintroduced some of the things on her original "do not eat" list, such as eggs and soy. The last foods we will probably ever reintroduce would be gluten (wheat) and casein (dairy), as these seem to be the most potent food allergens from other people's stories.
So, that's our story and I hope it inspires others to try the same and I wish you all strength and patience.
Best, Matt
I am back on this website to hopefully to help others get through the tough times that we experienced. This website was definitely helpful to us.
Our daughter, Stella, developed absence seizures about 2 months before her 5th birthday. Within a week, we had figured out from our own research online that she was probably having absence seizures. We visited a neurologist, had the EEG diagnostic tests, and it was confirmed. She had already had spinal surgery for syringomyelia when she was 4 months old, so we thought it might be related to that. She had an MRI and all looked normal. We then learned about the available treatments for absence seizures and the choice (drugs) was incredibly depressing.
After figuring out that there was really no definitive evidence that having these seizures produced long-term risks to the brain, we decided to hold off on using drugs and look into other possible treatments. During this period, we had to make sure she wasn't ever on high playground equipment, riding bikes, or any other activity that a 5-10 second seizure would put her at risk of an accident.
We began to research what environmental triggers had ever been anecdotally or scientifically linked to seizures. The overwhelming conclusion was food. So, we put Stella on the GARD diet. We didn't see any improvement for the first month. The frequency of her seizures seemed to just cycle between good days (less than 10 seizures) and bad days (over 50 seizures). However, this cycling actually would give us moments of hope that something was working and that helped us stay on our goal of not going to plan B (drugs).
Our pediatrician suggested that we give Stella a blood test (Immunolabs) to measure for food sensitivities/allergies. She had told us of another family who took the test and after following the diet changes their boy's autism symptoms improved dramatically. So, Stella's results listed about 15 foods that she should avoid, including gluten, dairy, corn, soy, various nuts, and a few other items. We immediately eliminated these foods from her diet. About two weeks later we consulted a pediatrician who was an allergy specialist, and we had Stella tested using the skin prick allergy test. Many of the same foods that we had already started to eliminate came up as allergens on this test as well.
Well, to cut this story short (I might add more later), Stella followed this "elimination-4 day rotation" diet very strictly with absolutely no "cheating." She was resistant at various times as their was a learning process in finding the right foods, preparing the foods in a way that they were still tasty, but she was a trooper and didn't complain very much. After about 2 months we started to see consistent improvement, finally observing her last seizure on March 18 of 2008. We had mini-celebrations at the 1 week seizure-free stage, 1-month, 50 days, 100 days, and finally 365 days. She is still following the diet yet we have slowly reintroduced some of the things on her original "do not eat" list, such as eggs and soy. The last foods we will probably ever reintroduce would be gluten (wheat) and casein (dairy), as these seem to be the most potent food allergens from other people's stories.
So, that's our story and I hope it inspires others to try the same and I wish you all strength and patience.
Best, Matt
I look forward to reading what you have to share. 