Gracies story (as told by her mum Lizzie)

My 3 year old daughter, Gracie, had her 1st seizure in October 2021. When I first took her to a&e my concerns were dismissed as Gracie having 'temper tantrums' and we were sent away. Three days later we found her having a massive tonic clonic seizure in her bed. Neither me or her dad had ever seen anyone having a seizure before and it was one of the most horrendous moments of our lives. Since then we have been unable to get her epilepsy under control. We have had good days, where we see our little girl starting to come back to us, but these are far outnumbered by the bad days. We have 'failed' 4 different medications and a course of steroids so far. Her epilepsy is severe and debilitating. Every day, twice a day, we give her a cocktail of medications. At this point we are not sure whether it's the Epilepsy or the medications that are affecting her more.

Therefore, we have made the decision alongside our medical team at Birmingham Children's hospital to try  medical ketogenic therapy with Gracie. This diet was developed in the 1920s to treat people with epilepsy but its use declined due to advances in medical science. However, it's use is starting to gather traction again now. It is a very low carb diet in which you get most of your calories from fats. U like the version used for weight loss, the medical version is monitored very carefully by a team of specialists. 

To support Gracie, we as a family are all going to make the transition to the keto diet. We know there are no guarantees but I can not keep giving my little girl an endless cocktail of drugs every day that leave her unable to even walk and still do not stop her seizures. 

To read more about Gracie, her epilepsy and to follow her journey I have a page on Instagram documenting it all @the_ketomum

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