Hello. I was looking for some wisdom from the forum memebera. I am 43 and a first time father of a 2 month old boy.
I have chari 1 and live a pretty good life, no limitations, but with constant pain. I am wondering about the possibility of chiari for my son, and if there is anything I should do?
He is healthy so far, although he does have an issue with choking on breast milk. I used to choke on food all through my youth, and his choking made me worried he might have chiari.
Thanks in advance for any advice or experience.
There is no a single "Chiari" gene so the genetics is not worked out.
In general, 3-5% of the population has some cerebellar tonsillar ectopia. If you have a first degree relative with a Chiari(so all your kids, siblings, etc), you roughly double that chance(so, your son has an approximately 6-10% chance of cerebellar tonsillar ectopia).
Now, the question of what that means is completely open. I'm not aware of anyone who routinely screens relatives for Chiari. Study of choice would be a head MRI(and need to be read by a pediatric radiologist because the 5mm definition has little to no relevance in children, who are still growing). Getting the MRI will require general anesthesia. The American Academy of Pediatrics recently came out with recommendations to avoid elective general anesthesia under the age of 3.
In general, just let the pediatrician know your history and follow for symptoms. It is rare a child in our area gets imaged due to choking until they have been evaluated by their pediatrician, GI, swallow study, etc.
Treat the symptoms until they can't be treated anymore, since, once you image, particularly in children, you tend to start down the surgery pathway. Chiari decompression is usually the step before a feeding tube in children with feeding issues and a Chiari.
So, in summary, pay attention to your son. You'll know him better than any medical professional. And let his pediatrician know your history.
Hope that helps a little.
Congratulations. Hope his mother is enjoying her first Mother's Day with him(and you enjoy Father's Day next month)!
Thank You so much for the reply. We are enjoying mothers day. I listed chari on the forms for doctor, but negelected to mention at my babys visit. I will do so next time. I always feel bleesed when reading this forum, as I have chairi, but really live a good lifestyle compared to the difficulties others face.