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Grace was born January 2006 healthy as can be.  At four months of age, we started noticing these sudden jerking motions she would make. Soon after she was diagnosed as having a rare form of Epilepsy called Infantile Spasms and later diagnosed with Lennox-Gastaut Syndrome.  Grace’s seizures have transitioned into Tonic and Focal seizures and only has a Tonic Clonic seizures during times of sickness. Grace’s current course of treatment includes the Keppra,  Onfi, and second course of Felbatol,.  Past treatment options include Vitamin B-6, ClonazepamACTH, Topamax, Depakote, Felbatol, Zonegran, Sabril (Vigabatrin), Lamictal, BanzelVimpatNeurontinDiazepam, Prednisone and the Ketogenic Diet.

This past year Grace had a Mitrofanoff where her appendix was used to create a tunnel between her bladder and her belly button creating a port that we are able to cath through.  This procedure has removed many barriers to frequent cathing and we hope to be able to do more traveling in the coming years.

In 2015 we added monthly IVIG therapy to boost Grace’s immune system; while initially looking for a way to keep simply prevent her from becoming sick which are the times when she has had increased seizure activity we found that Grace had a number of holes in her immune system.  (Please learn why vaccinations help protect the more vulnerable populations in our society.)  We found that Grace has no immunity to Tetanus, Pneumococcal, or Diphtheria.

Grace had a corpus callosotomy  in 2010 to help reduce the harder drop like seizures she was having.  In July 2013 Grace received a Vagus Nerve Stimulator (VNS) which has decreased her seizure clusters significantly.

Grace’s epilepsy treatments are managed through the Minnesota Epilepsy Group at the Children’s Hospital of Minnesota in St. Paul, MN.  The Minnesota Epilepsy Group treats pediatric through adult patients and is one of the best practices in the nation.

Grace’s medical team also consists of  an Ophthalmologist at the University of Minnesota Masonic (Amplatz) Children’s Hospital, a Physiatrist at Gillette Children’s Hospital, Urologist with Pediatric Surgical Associates, and GI with Minnesota Gastroenterology.

We follow with a local pediatric neurologist (in the case of emergency) along with an Endocrinologist  at Blank Children’s Hospital along with a GI at Mercy Medical Center in Des Moines.  Grace receives Occupational, Physical, and Speech Therapists at ChildServe and recently received a communication system is activated with her eyes. UnityPoint at Home provides nursing care which allows for Joy and Kevin to remain employed.  In addition, we follow with Pediatric Cardiology, PC,  Midwest Immunology, our amazing Pediatrician at Des Moines Pediatric and Adolescent Clinic (DSM Peds).

Grace enjoys exploring new spaces outside of the home and attending school. Grace loves books we can’t go anywhere without a book or two.  Grace also enjoys lights and music.  She loves to dance as part of the Dance Without Limits program at Ballet Des Moines, play baseball at the Kiwanis Miracle League, loves to swing thanks to Make-a-Wish Iowa and ride her bike thanks to Variety Club of Iowa.

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