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Blog #10 – Batten Disease

Batten Disease 

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 can you be a part of.  

Enjoy the community, and please let us know how we can help.  If you have a child with rare conditions, click here to create a warrior page.  

If you just know someone we would love for you to follow what we are doing, engage in some of the crazy events that we do, and click here if you want to donate or help raise some awareness for these millions of families fighting for possible during this tiring fight. 

Feel free to jump down to the medical description of this condition below but also, get in community to learn more.  Please utilize the groups below if you have not already had access to a support system amongst your journey of understanding Batten Disease: 

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://www.bdsra.org/

https://beyondbatten.org/understanding-batten/living-with-batten/

 

Medical Information about Krabbe Disease: 

With so many confusing things out on the internet, we also want you to also remember that Take Part supports children like yours on a day to day basis! If you want people to know the TRUTH of what your child is going through, go ahead and create a warrior profile through our website. This can be used to raise awareness on social media, or simply just shared between friends and family for updates. 

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. 

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. 

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 
  • 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. They can also become part of the research initiatives to get their child observed closely. Joining the research initiatives from the Take Part Foundation can be a great idea. They take a scientific approach to research and have the necessary funding to support the research projects. It may help save your kid’s life and discover a cure for so many others.