The search continues for more information that is understandable about pediatric epilepsy. I have found some great resources but I have yet to decipher the language so to speak. It is also getting harder for Katrina to willingly express what she is feeling before or after we think she is experiencing a seizure.
my questions is many for the parents and caregivers - what can be done to guide her and help her express herself in a meaningful way so we can help her? I am trying to gather more and more information so we can help her teacher and principal this year. We have a meeting with them and the PE teacher and head of pupil services Monday the27 of August 2 days before school.
Michael, research the ketogenic diet. It can be very effective with epilepsy, many children go into remission without meds. This is what helps me with chiari also, you may want to try it yourself! It really reduces brain pressure for me. I eat only natural, no processed foods. Some keto diets allow artificial sweetners and other crap. Try for her a natural diet with little to no carbs.
Adria,
Thank you for that we. We have tried it and though I can do it without much difficulty but Katrina has multiple food allergies that makes her unwilling to give up some of the things she dearly loves. We have tried explaining to her that it will benefit her in the long run but alas to no avail. She is bullheaded like her father.
I am still trying to coax her on how to tell us when she is feeling funny before or after a seizure. I think it would help us greatly especially when we have a meeting with the school scheduled.
I raised 2 keto kids and know what you're saying. Not sure how old your daughter is.. but for me, if under 18 she would have absolutely no choice in the matter. I would put her on the diet and eliminate everything else from the house so there would be no temptation. As a parent you have to make tough decisions for the health of your child. She has an inflammatory brain condition and its critical for her brain development to have the correct diet.
Adria,
I love your feedback and respect it especially since you have done it. I sent you a friend request cause I would like to chat with you more about this and other issues that really do not fit on this board. The people here though are great and many are like family to me, but I do not want to clog up the board with a non related issue, someone make take offense even though I believe the vast majority would not.
thank you and and forgot she is 9.