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Blog #10 – Batten Disease
Batten disease is a nervous system disorder that is extremely rare and can be fatal. If your 5-10 years old healthy child starts exhibiting vision problems or seizures, they may be suffering from this rare pediatric condition. While early signs are quite subtle, children with Batten disease don’t often survive through their teens. But there is always hope, and if you can get early help and be part of the ongoing research, your kid may survive.
Let’s explore more in detail about Batten Disease, its symptoms, diagnosis, and treatment options that may help save your kid’s life.
BEFORE YOU READ ANYMORE, DON’T MISS THIS OPPORTUNITY!
As parents of a Warrior (a kid with a rare condition like this) we have spent countless hours creating resources that we have used and will help you and the warrior in your life navigate this difficulty, scary, and sometimes lonely journey. We have waived ALL fees, so it is 100% free for you. We just need your email so we can show you have to best access the resources.
If this is our first blog you are reading, we like to get some medical professionals to do some research so we can understand and help you (as a parent or a friend of a family) to better understand what it is and more importantly, what communities you can be a part of.
With so many confusing things out there on the internet, we want you to also remember that Take Part supports children like yours on a day-to-day basis!
As a team, none of us ARE doctors; however we work with some amazing medical professionals that have given us more insight below. Please continue reading and use the information to navigate your own personal journey or share with anyone you may know may benefit.
What is Batten Disease?
Batten disease is a fatal metabolic disorder that is caused by a genetic mutation and runs down through families. It affects the ability of the cells to break down cellular waste and get rid of it. The patient’s body is unable to dispose of sugars, lipids, and proteins. The waste continues to build up and causes nervous system problems, eventually leading to death.
It is one of the rarest pediatric health conditions with no cure currently available. The focus of the healthcare providers is to treat symptoms and improve your child’s quality of life.
Symptoms
While the symptoms usually vary from one patient to another, the initial signs of Batten disease are:
- Loss of Vision
- Seizures (Epilepsy)
- Cognitive and Speaking Problems
- Clumsiness and Coordination Issues
As the condition worsens, the following symptoms start appearing:
- Tics, tremors, and muscle spasms
- Changes in mood and behavior
- Hallucinations
- Dementia
- Sleep Problems
- Weakened limbs that eventually get paralyzed
- Heart problems like arrhythmia
Diagnosis
The healthcare provider examines your child for diagnosis and asks about their symptoms and your family history. They may ask for a DNA test, take a biopsy, or perform an eye exam (Electroretinography or ERG).
Treatment
Currently, there isn’t any specific treatment available for curing Batten Disease or slowing down its progression. However, some treatment options are available for effectively managing the symptoms and improving your child’s quality of life. The doctor may prescribe anti seizure medications for controlling seizures, for example, and treat other medical issues as needed.
Some studies show that Vitamin C and Vitamin E doses can be effective in slowing down the progression of the disease. Unfortunately, however, no treatment exists to date that can make the Batten disease any less fatal.
Parents can join support groups to get support and information on the latest research and treatments.
Facebook Groups for support:
https://www.facebook.com/groups/356447117828679
https://www.facebook.com/groups/BDSRA
https://www.facebook.com/groups/1870517819878476
https://www.facebook.com/BeyondBatten
https://www.facebook.com/bdfauk
https://www.facebook.com/battendiseasenews
https://www.facebook.com/ForeBatten
https://www.facebook.com/LivingBatten
Websites for support:
https://beyondbatten.org/understanding-batten/living-with-batten/
DON’T MISS OUT!!! TAKE ADVANTAGE OF THIS OPPORTUNITY!
As parents of a Warrior (a kid with a rare condition like this) we have spent countless hours creating resources that we have used and will help you and the warrior in your life navigate this difficulty, scary, and sometimes lonely journey. We have waived ALL fees, so it is 100% free for you. We just need your email so we can show you have to best access the resources.