Wednesday, August 3, 2011

Neurologist Appointment

Harper is currently on Depakote Sprinkles which have definitely helped control her seizures but have not stopped them completely.  We tried adding the Keto diet which did not help with seizure control but has helped her gain the weight she needed to be gaining.  So we added Lamictal about 4 weeks ago.  Since then her seizures have gotten a bit worse but that is more because these drugs do not mix very well and the process of combining them is slow.  After much discuss and a thorough examination it was decided to push through the pain and see if this combination would be successful for Harper.  It has the potential to be really good but it is not done very often because of the side effects of the combination.  However, Harper seems to be doing really well health wise and showing improvement in her therapies.  We will no for sure in the four weeks if this combination of drugs is going to help with Harper's seizures.

REMINDER:
Friday, August 5th at Community Life Church in McKinney, TX at 6pm there will be an Auction Fundraiser for Harper.  Bring friends and family!  It's open to everyone.  Harper hopes to see you there!
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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!