Chiari Online Support Group

How young can Chiari manifest?


#1

Hi! I’m new here. My husband was diagnosed with his Chiari I malformation in 2009 (he first became symptomatic in 2007). Recently his adult sister has been experiencing extreme headaches and is after extensive testing is going for an MRI at the end of this month. I am concerned that she will present with a Chiari as well.

My bigger concern however is that my 2.5 yr old daughter has been exhibiting odd behaviour which could be her just being a little kid, or it could be her expressing her discomfort in the only way she knows how.

To all you who have young children diagnosed: how young were they when diagnosed? How did they present their symptoms? What led you to having the MRI done?

Thanks in advance.


#2

Hi my name is Holly i dont really know if this answer would help but I was originally thought to have cerebral palsy due to developmental delays and muscle weakness as a baby along with other symptoms i also wasn’t hitting hitting any of my normal milestones on time as a baby. this was all happening before the age one 1. it wasn’t until just recently i am now 28 that a neurologist who did my first mri of my entire life told me i had been mis diagnosed and have an Arnold-chiari malformation.


#3

If I had questions like you do, then I would first look up neurosurgeons for kids, Florida hospital medical group. There is more information than you have thought to ask. Dr. Eric Trumble would be the only pediatric surgeon I would take my child to. You can also probably call his office and talk to their wonderful staff.
You also apparently have not talked to your pediatrician about these concerns, I certainly would start there.
Just know you have friends to lean on and are wishing you the best for everyone in your family.


#4

Mine was diagnosed as congenital, or present at birth. Symptoms were there when I was a child, but definitely not as strong as they are now (am 44). I have read several articles on the internet about it being hereditary, however, I have read several articles that say there is not much evidence to back the claim up. Checking into a vision test and glasses (I believe they have almost a breakproof kind for children of your daughter’s age) might be a good idea too. If you suspect Chiari, she probably has the lazy eyes already. I guess your family doctor would know better about that though. hope this helps.