The scariest part of having a child with Angelman Syndrome is that he or she will most likely have seizures. My son Nathan had his first seizure at 15 months old. He was sick with fever. So it was called a "febrile seizure", which I understood to mean as an isolated incident. However, this went on for almost a year, being called the same and treated as such.
We were in the hospital on a monthly basis and it was never explained to me that seizures could be deadly. On one hospital stay the doctors struggled to control his seizures and he lay there heavily sedated. They pulled my husband and I out of the room and began talking about feeding tubes and a Trachea (breathing tube in the neck).
WHAT IS GOING ON WITH MY BABY?! Why is his brain doing this? What is the cause? Let me at it!!
I ordered the doctors to send me a CPR specialist, and a nutritionist immediately! I need to know what to do!
Now, anyone can have a seizure. Symptomatic Seizures are caused from a known stroke, tumor, brain lesion infection or brain trauma. Seizures with an unknown cause are called Idiopathic. Although my son has a neuro-genetic condition, his seizures are idiopathic. They maybe related, BUT NOT THE CAUSE!
As I understand it, Dr's do not completely understand why the brain seizes. "Abnormal brain activity" it is called. Well... I believe everything has a cause and effect. Which is this? "Rarely are seizures deadly" I was told.
My friends... Our AS community lost 3 Angels recently. Two of them to seizures. This is heartbreaking and not ok with me! This is not what I consider rare.
Since my Angel hardly let me sleep, I put that time to good use. I searched so much and reached the end of the internet. Just kidding, but I did find answers and options for seizures.
The purpose of this blog post is to share our journey with you and the things that I am discovering.
Our cure is coming but it may or may not help with seizures. What I have learned is that seizures can be controlled and it will not cost you thousands of dollars to make a significant difference for your child.
Let's understand that children/people with Neurological problems cannot be expected to have "Perfect" digestion and absorption. Nutrition is the MOST important thing we can do for them.
*The Ketogenic diet, *Gluten Free and *Dairy Free are options with proven results. Because they cannot be produced in pill form by the pharmaceutical companies you will not hear this from your doctors.
One year ago I started Nathan on a Gluten and Dairy Free diet. He eats very simple and REAL food. For the first time since Nathan was 15 months old, he was seizure free for 6 months. Now, he will only seize when sick with fever or sleep problems.
I am so grateful for the things I have learned and the success we've had. But my work is not over. There is more I can do. This is a journey and one that I need to share with you, so we all can start winning against seizures.
Next post, I will share more details about "Nutritional Therapy", what I do for Nathan and the story of another AS Parent who also practices "Nutritional Therapy" for her Angel who does not have seizures, but has benefited in other ways.
~Lizzie
( you can email me if you want more info immediately Lizsordia@gmail.com)
