Chiari Online Support Group

9 year son just Diagnosed with Chiari Type 1...lots of questions


#1

At 2yrs old my son was diagnosed with several development delays and concerns, from sensory, occupational, physical, speech, behavioral and social. He’s been receiving services since and progressing well.

Over the last year he started complaining of headaches and dizziness. One doctor told me he needed more salt in his diet and not to worry. His primary told me since I had concerns related to attention I should take him to a neurologist. Although very dismissive of my concerns, she sent him for an MRI which resulted in his Chiari diagnosis. She called me and indicated we would treat this conservatively. BUT Many evaluations over the years have indicated very low working memory (6th percentile) and along with the other concerns above, I can’t help but think this is all related. Had she spent any time listening to me when I came in, she would have the full picture.

Anyway, I made an appointment at NYU and Mass General for a second opinion. I’m scared. What is the likelihood these are symptoms? How likely will it get worse? Could surgery fix all of his other concerns?

ANY support, comments, suggestions are welcome.

Thank you.
Scared Mom, Kris


#2

Hi, Kris! I can't answer any of your questios, as I don't have any answers to them. I just wanted to wish you and your son luck in your upcoming appointment and further treatment.

Well, acctually I have some suggestions. I think, the best way you can help your son, apart from being there for him, is to educate yourself about these matters(as you already are doing by reaching out here). If you haven't already read it, check out our Hints for Parents. There is also this page, which has many resources, helpful for parents of children with Chiari, listed.