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Our family

Wednesday, October 31, 2012

Purex plus Oxi Detergent


I got a chance to try out the new Purex Plus Oxi.
this is an awesome product, it's Purex detergent with Zout stain remover.  You can also use it as a pretreater.  I used it on Hannah's blanket that had some stains on it.  It got it out right away and left a nice smell.  Chuck doesn't like "flowery or girly" scents but he liked this new one.
  Post the link to this post on your facebook page for a chance to win  a coupon for a free bottle of it. "Joan's blog sent me for a chance to win a free bottle of Purex plus Oxi"
Purex is running one of several giveaways right now to tie in with their release of new Purex Plus Oxi, with very nice CASH prizes--
(1) Grand Prize:  $1,000
(250) 2nd Place Winners:  $25
You can enter once daily and the drawing ends on November 30th.  Here is the link to that giveaway--Good Luck!

Purex website:
Twitter:  @Purex
Facebook:  @Purex

Thursday, October 11, 2012

Letter of Medical Necessity for the Ketogenic Diet

this is very interesting and explains a lot about the Ketogenic Diet that Hannah is starting.  The date has been changed to November 27.  I just realized that her spinal fusion 2 years ago was 11/29 the Monday after Thanksgiving and this is the Tuesday after Thanksgiving!

RE Ketogenic Diet

To Whom It May Concern:

Hannah Jones is a 17 year old young lady with a diagnosis of static encephalopathy secondary to a chromosomal abnormality (1q21325 deletion) resulting in significant mental retardation, complex partial seizures with secondary generalization, hypothyroidism, deafness and blindness. Hannah's seizures have remained intractable despite being tried on multiple medications to include,Topamax, Dilantin, Tegretol, Depakote, Lamictal, Zonegran, Phenobarbital, Gabatril, Keppra, Klonopin, Trileptal, and  Banzel.  For this reason, our next step is to try the Ketogenic Diet as treatment for Hannah's uncontrolled seizures.

The Ketogenic Diet is a rigid mathematically calculated diet that has been an approved mode of therapy for children with intractable seizures.  The diet has been in existence since the 1920s and it NOT EXPERIMENTAL.  It is a high fat, low carbohydrate, low protein diet designed to maintain a patient in a constant state of ketosis.  It is ketosis that serves to abate seizures.  Statistics from Johns Hopkins University Hospital show that about 25% of the children placed on the diet have their seizures controlled, 50-60% show significant improvement, and 25% have little improvement or are not able to tolerate the diet for other reasons.

Many centers do not use the diet or are not familiar with it because of its strict requirements and the commitment in knowledge and energy required on part of the Epilepsy Center staff to effectively implement the diet.  At The Alfred I. duPont Hospital for Children we have a team of individuals who have been trained in the use of the diet.  The team includes the pediatric neurologist, an advanced practice nurse, dietician, pharmacist, and psychologist.  Our inpatient nurse staff, who have been trained in the use of the Ketogenic Diet, are also very important to successful implementation.

RE: Hannah Jones
DOB: 7/9/1995
MR#: 10323085

Induction of the diet involves approximately a five day hospital stay.  During the first 48 hours, the child is fasting to deplete carbohydrate stores and achieve ketosis.

Hospitalization is necessary to closely monitor and treat hypoglycemia as well as medical toxicity. The high fat diet is then slowly introduced over the next three days.  Complications during this period may include hypoglycemia, or low glucose, excessive ketosis, nausea, vomiting, and diarrhea. 

In addition, hospitalization provides time for extensive teaching, and impresses upon the parent the seriousness of the diet.  While the latter is not the foundation for why we choose to do this inpatient, it helps to assure success, commitment, and compliance to the diet once the family goes home.

What we hope to achieve through the use of the Ketogenic Diet is complete cessation of Hannah's seizures, or atleast significant reduction of them.  We would also like to achieve an elimination or significant reduction of some of the medications Hannah is on, thus making her more alert throughout the day and improving quality of life.  With the cessation of, or reduction in the number and severity of her seizures, and the possible reduction of anticonvulsant medications, this should ultimately reduce the number of ER/hospital admissions in the future.

Hannah is scheduled for admission to the Alfred I. duPont Hospital for Children on 11/27/2012.  If you have any questions, or if I can be of further assistance, please do not hesitate to contact my office at 302-651-5930.

Thank you for your time and consideration.


Chief of Division of Neurology