CARTER'S STORY

Carter is a 3 yr old amazing little boy who has a very rare syndrome called Dravet Syndrome.

 

Carter started to have seizures when he was 4 months old. His seizures lasted anywhere from 20 mins to 45 mins.

 

When he was 13 months, he had a 4 hour seizure that he had to be put into a medically induced coma. It was then that the Drs. did the genetic test and it came back that the SCN1A gene was mutated, or better known as Dravet Syndrome. 


Dravet affects every aspect of Carter's life. He can not regulate his own body temperature, which means he has to stay in a regulated 72 degrees. Carter can not play outside like other children his age. 


Carter has severe speech delays and very low muscle tone. He also does not have an immune system and the slightest cold or illness can be catastrophic for Carter.


He has been in a coma twice fighting for his life.

 

He has had several central lines and now has a med port for blood draws and emergency needs because his veins are not accessible. Carter has also been diagnosed with valgus of the knees. This is caused from poor muscle tone and orthopedic issues which is also a side effect of Dravet. Carter will need extensive physical therapy so he doesn't lose his ability to walk. But because of his inability to regulate his body temperature and not having an immune system, this physical therapy needs to be done in his home.

Carter also needs medication that is expensive and not covered by insurance. Currently Carter can have up to 100 different seizures a day. The two medications he takes now help but do not prevent the seizures.

from Carter's youcaring page

https://www.youcaring.com/carter-a-true-dravet-warrior-497591

Day four on vents, he hasn't improved but his heart rate has dropped to low 60s. Still doesn't have any urine out put and is extremely puffy. Liver function is good, blood pressure is stable, throat is still swelled. PLEASE continue prayers for healing, no damage done to any organs and no loss of any functions like walking and talking from the 3 hr seizure.  facebook february 16

Asking everyone to please pray for Carter. Not sure whats going on this past week but he has been seizing a lot. While he is sleeping the slightest noise will startle him into a seizure and the last 2 days while he is awake about every 10 mins he will just go limp and stare off like he's lost. These will last between 2 min to 10 mins. Its not fun to watch him go through all of this. Please keep him in your prayers   facebook April 4

                                                         What is Dravet Syndrome?

 

Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy, with an estimated incidence rate of 1:16,000 to 1:21,000 [1]. It is a debilitating, life-long condition that can severely impede the quality of life of the patient. Patients experience frequent seizures, poor seizure control, and developmental delays. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge. Development remains on track initially, with plateaus and a progressive decline typically beginning in the second year of life. Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated health issues, which also need to be properly treated and managed. These conditions include:

 

    • behavioral and developmental delays

    • movement and balance issues

    • orthopedic conditions

    • delayed language and speech issues

    • growth and nutrition issues

    • sleeping difficulties

    • chronic infections

    • sensory integration disorders

    • disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)

 

Children with Dravet syndrome do not outgrow this condition and it affects every aspect of their daily lives.

 

Unless a cure or better treatments for Dravet syndrome and related epilepsies are found, individuals with these disorders may face a diminished quality of life. Current treatment options are extremely limited and the prognosis for these children can be poor. The constant care and supervision of an individual with such highly specialized needs is emotionally and financially draining on the family members who care for these individuals.
http://www.dravetfoundation.org/dravet-syndrome/what-is-dravet-syndrome

MALLE'S MAGNESIUM OIL 2016

[My cousin] sent it to me 3 months ago to try on Carter.

 

I was skeptical but thought at this point what does he have to lose. He was twitching nonstop, drooling all day to where we changed his shirts 3 to 4 times a day, having screaming seizures in his sleep so I chanced it. Everything stopped immediately after his 1st bath in the oil.

 

I couldn't believe it.

 

We went almost 4 days last week without using the oil in his bath and the drooling came back, his speech(the few words he does say) was slurred and his eyes were glazed over. Gave him a bath in it again and everything went back to normal!! Im just amazed at how this helps him!!

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