Facility:Lutheran Children’s Hospital
We would like to nominate Margaret for the “Hero of the Month”.
Maggie is a very special 12 year old. We have worked with her for awhile and all of her hospitalizations were due to a seizure disorder. She has been diagnosed for years with intractable seizures and been on heavy doses of medications to keep the seizures under control. Maggie was in a special needs class but was not able to attend class due to her seizures. Maggie is a typical child in that she lives with her family, goes to school, and has great support. She has had multiple hospitalizations due to her seizures, lots on long days of treatments and therapy sessions, and stress on her family!
About a year ago Maggie was placed on a Ketogentic diet to control her seizures. Maggie has a special calculated diet that puts her body into ketoacidosis and when in that state, her body is able to reduce or stop the seizure activity. The stress of this diet on the child and family is huge because one slip from the diet will put the child back into intractable seizures. For Maggie her feedings are measured out and there are side effects that the team has to monitor to assure her body is adjusting and it is successful. The hospital stay to get the family trained and comfortable is about 5 days and then it is a HUGE lifestyle change for all involved. Everything has to be sugar free (medications to toothpaste) no lotion or soaps that will be absorbed, and everything is calculated to the grams. This diet has miraculous results in controlling seizures and getting the child back into a normal lifestyle. It is a very worthwhile endeavor for the children and families to take on and many children have been able to come off medications to regain their skills and help them recover.
Her mother said she loves movies and DVD’s when she is having a bad day. Maggie does not respond well to over stimulation and she has not been able to do any special trips or family vacations. She also has to do lots of occupational therapy to gain back skills lost due to seizures, medications, and time. Her mother said they could purchase toys to help with the therapy in a fun way and of course more movies and music which are her best way to cope! She deserves a great big cheer up and I think this is a great way to allow her some control in a situation that she has been totally unable to control! We are excited to nominate her to your wonderful program. Thanks in advance for your consideration of her.