Braxton Ried

Dravet syndrome, also called severe myoclonic epilepsy of infancy (SMEI), is a severe form of epilepsy.  It appears during the first year of life with frequent febrile seizures – fever-related seizures that, by definition, are rare beyond age 5. 

Later, other types of seizures typically arise, including myoclonus (involuntary muscle spasms).  Status epilepticus – a state of continuous seizure requiring emergency medical care – also may occur.  Children with Dravet syndrome typically experience poor development of language and motor skills, hyperactivity, and difficulty relating to others. 

Braxton Ried

Braxton is still full of love and full of life!  He is such an affectionate little guy who loves to hug and dance!  Show him a horse and you will have a friend for life!  We are still very active in therapy 3-4 days a week.  At this time, we are not seeing any major delays!

Since becoming a part of Neighbors Helping Neighbors, Braxton's seizures have been increasing.  We are now seeing different types of seizures with no way of knowing what kind of seizure we are going to get or when. 

He is currently having around 30-50 myoclonic seizures a day.  We have been struggling to find the "right" combination of medications for our son, but this is part of the syndrome.  He is on 3 different anti epileptic medications and we will soon be adding Frisium. 

Braxton Ried

Unfortunately, our insurance will not cover this drug because it has not yet been FDA approved!  Since October 2009, we have been using Nasal Versed to stop his seizures, which is not covered by our insurance either.  What a difference this has made!  The seizures will stop within 3 minutes and the medication is usually out of his system in 20 minutes.  Braxton's triggers are now fever, body temperature being too hot or too cold, lack of sleep and over stimulation or getting too excited.   

We have had several other issues that we have conquered!  Braxton has been admitted twice with Respiratory Distress Syndrome which could have been caused by a possible diagnosis of Asthma and he recently fought a bacterial infection in his bloodstream, also known as Sepsis. 

Braxton Ried

In May, we went to Chicago to visit with our "main" Neurologist.  Dr. Laux is very pleased with how well Braxton is doing!  However, she reminded us that he is still very young in his diagnosis of Dravet Syndrome. The next 4 years of his life are very crucial because this is the critical period for brain development.  Please keep our little guy in your thoughts and prayers!

In August our family will be traveling to Greenwich, Connecticut for the IDEA League conference. This conference will bring together leading experts from around the world to share information relative to recent advances in laboratory and therapeutic approaches for Dravet Syndrome. We will have the opportunity to interact with others, learn more about progress being made in research, receive education on lifestyle and coping issues, and take advantage of a personal consultation with Dr. Dravet! 

 

Braxton Ried

Braxton Ried

Braxton Ried

“We will not give up on our son and we will continue to fight for

him to have as normal of a life as possible.”

Braxton Ried

Braxton Ried