Hope For Amanda

Living on Faith, Hope & Love

We’d like to share Amanda’s story with you.  She is the angel in our life who lights up a room with her smile, sparkly eyes and sweet, giggly laugh. 

Our story was written during the summer of 2006.  We are excited to tell you our Mandy Moo is doing much better!!

 

 

We started this journey when Amanda was 6 months old; 5 days before her first Christmas.  Her first seizure occurred on the left side of the body and lasted 45 minutes.   We started her 1st drug and 20 days later, she had another partial seizure but this time it occurred on the right side of the body. During our second trip to Children’s Memorial Hospital in Chicago, one of the Doctors mentioned Dravet Syndrome to our Neurologist.  Three months later, when Amanda was 10 months old, we started to notice new seizures such as absence and myoclonics.  The possible diagnosis of Dravet was documented when her myoclonics were recorded on a Video EGG at 11 months old.  By the time she turned one, she was having 100’s of myoclonic seizures a day. 

 

Shortly after her first birthday, she had another partial and her first tonic-clonic (grand mal) within 3 hours of each other.   During our stay in the hospital, she spiked a fever and we realized that the seizures were a precursor to an illness.  Unlike most children, her seizures tend to be the first symptom of an illness.  That day in the hospital is very memorable to us because it’s the last day Amanda had 6 hours without a seizure. 

 

We decided to try the Ketogenic Diet when she was 18 months old because Amanda’s myoclonics and head drops were progressing.  The Ketogenic Diet is a very high fat/low carb diet.  Amanda is at a specific ratio of 4:1 (4 parts fat to every 1 part carb/protein).  Her meals and snacks are calculated by our dietician and weighed to the exact gram in order to keep her at the specific ratio.  Since we’ve started the diet, she has only had convulsive seizures (partial and tonic-clonic) when ill. 

 

Amanda is three years old and has had almost every seizure type including absence, complex partial, partial, myoclonic, head drops, and tonic-clonic . 

 

We believe that Amanda is doing as well as she is today because we made the decision to stay on the Ketogenic Diet, instead of trying multiple drug treatments.  We also started the Illinois Early Intervention program when Amanda was 18 months old.   We have been aggressive with physical, developmental, occupational and speech therapies. 

 

One of our greatest challenges is Amanda’s heat sensitivity.  She is optimal at 65* and as the temperature rises, her seizures significantly increase.

 

Amanda is slightly delayed in her speech, developmental and occupational areas.  Her physical strength is moderately delayed but we continue to work with her daily.    Even though Amanda continues to have over a 1,000 seizures a day, she remains strong and continues to work through them.  She is involved with her peers in weekly activities, such as ballet and a Terrific Tots program.  We’re trying to expose her to as many mainstream programs while she is still able to function at this level. 

 

We started a new drug from Canada in November 2005, which has reduced the number of seizures she has per hour.   We have also noticed significant improvement in her speech with the addition of this drug.

 

Since we are still having multiple myoclonic and head drop seizures per hour, we will be trying a drug from France which has worked very well for other children diagnosed with Dravet Syndrome.  We hope to start the French drug in the summer of 2006. 

 

Amanda amazes us on a daily basis with her fun, lighthearted personality.  She continues to grow and enrich us each and every day. 

 

Amanda is very special and we feel blessed by having her in our lives.  She has touched so many people and we hope her story touches you as well.

Who is Amanda? (aka Mandy and Mooski)

                             

Do you want to learn more about Amanda, click on her Fun Page : )

Amanda's Fun Page

 

Last Updated:  July 2006