Wednesday, April 27, 2011

Harper Update

Bummer!  Felbatol did not work to stop Harper's seizures so we have officially stopped that drug.  We are unable to try another drug at the moment because poor baby has an unexplained rash all over her body, thought to be viral and she has a staff infection on her leg.  She cannot take anything new until she is completely healthy.   So we are not traveling to Austin for therapy this weekend and are on antibiotics for the next 10 days.  Good news is that since we stopped Felbatol Harper can finally sleep.  Poor thing had very bad insomnia with that drug.

We hope she is healthy for her May 16th treatment.  We are going Friday to meet with the dietitian about the Ketogenic Diet for Harper.  I hope the diet in combination with her current drug Depakote works for her.  I think we are on the right path with her therapy we really really really would like her seizures to STOP!
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HARPER ELLE HOWARD - Her Story

Harper Elle Howard was born April 12, 2010 and at just three weeks old, began having seizures. Over the course of 10 months, Harper traveled across the US and underwent a multitude of tests. In February 2011 she was diagnosed with a rare and in some cases life threatening genetic disorder known as CDKL5. There are currently fewer than 300 cases worldwide. Those affected suffer from intense seizures, sensory issues, gastrointestinal difficulties, visual impairment, scoliosis, along with severely delayed developmental growth. For more information on this disorder please visit www.cdkl5.com. The severity of Harper’s particular case is unknown, but we remain hopeful. She has been prescribed intense therapy and seizure control to aid in successful mental and physical development.

Hope4Harper is an organization started to aid in her care. You may choose to help Harper directly with her expenses and although not a tax-deductible, ALL monies generated are used to provide Harper care that might not otherwise be available to her. Option two is a tax deductible option through The Children’s Hospital of Boston. Hope4Harper is working with Dr. Frances Jensen and her team at The Children’s Hospital of Boston on a seizure research project seeking out the best way to stop seizures in CDKL5 affected children. Please view the CHB Project page for more details.

Your support is greatly appreciated and we ask that you keep Harper in your daily prayers, continue to follow her progress and the progress of the seizure research project, as well as, share her story. With your help there WILL be a cure!