Hi, The discussion below has been reposted in hopes that others here may share experiences.
Posted by Donna McGee on September 17, 2015 at 10:02pm
I met with my 10 month old neurosurgeon last week and he blew me off I don’t see her nurlogist until novenmber and I have so many questions to ask them and its driving me and my husband crazy. the baby was just diagnosed with cm1 and I asked the nurosergon about her failure to thrive and sensory issues and he told me that has nothing to do with her condition. does anyone know what the out come is going to be for my baby? Shes only 10 months old and im very concerened with this.
I dont know alot about childrens chiari and i am sorry your family is having to go through this. Here is a website, hope it helps. Maybe you can print it out and take it with you to your doctor with your babies symptoms highlighted.
Chiari and infants is notoriously difficult to assess(what are the Chiari symptoms, what is something else). It breaks my heart how frequently I see children who have failure to thrive, poor feeding, G-tubes, etc when the primary issue is the Chiari(most often referred once the child is verbal enough to complain of head-aches).
For starters, make sure you are seeing a board certified pediatric neurosurgeon. www.abpns.org
As with many issues, if you are not happy with the first consult, consider other consultations. Neurology is a good start. Consideration of another neurosurgical consult may be helpful as well. With failure to thrive, GI is often involved. You and your PCP need to remain vigilant.
Symptomatic Chiari in a 10 month old is very rare(I see 100+ Chiari patients annually and need to decompress someone <2 years old once every 3 years or so). That being said, at a minimum, it is probably prudent to re-image in 6-12 months to assess changes(which could probably be done with neurology unless surgery is being considered).