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godisnumber1 (@godisnumber1)

Cerebellar Atrophy in Children

Stroke & Cerebrovascular Diseases | Last Active: Aug 14, 2017 | Replies (27)

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My son is 5 years old and has been diagnosed with cerebellar atrophy, large panel testing is being done, I am told not to look on the Internet about it, yet I am eager to know more.

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Replies to "My son is 5 years old and has been diagnosed with cerebellar atrophy, large panel testing..."

Welcome to Connect, Lisa.
While information seeking on the Internet can be overwhelming, many find that knowledge is power. It is important to know your informational needs. I did a little bit of research for you and found this general article about cerebellar degeneration to be a good starting point. Please note that is not specific to infantile cerebellar atrophy https://rarediseases.info.nih.gov/diseases/6019/cerebellar-degeneration.

Lisa, what specialists is your son seeing? What or who is your main source of information about his condition?

Mayo clinic Dr Bodensteiner

Hi Lisa,
Great to hear that you are in the care of Dr. Bodensteiner at Mayo Clinic. I see that you also ask elsewhere on Connect “Should I be worried?” I’m not a health care professional, so I speak to you as a mom. Whenever our children are diagnosed with something, we worry. But I admire that you are putting your worry into action. You mentioned that you want to gather information about your son’s condition to help you prepare for what is to come. Good for you! As you do your research, you will find out that you are dealing with a very rare condition and that there is little information available. This is not an easy road that you have been forced to travel down, but you know you have to do it. And you will for your son.

I’d like to introduce you to other parents who have search hard and found help for their children who have rare conditions and special needs. Their children may not have exactly what your son has, but they know first-hand what it is like to get a diagnosis and have to advocate for their child. Please meet @fernandavidigal @jennsprung @ihatediabetes @mrsjoanie @barsta and @lcamino. I hope that they will share their experiences about getting a diagnosis, how the searched for information to help them and the times when it was too much and strategies for coping.

Lisa, can you tell us a bit more about what you know and what are your next steps with your son? What have you been told?

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