Neurologist stated that if an MRI finds Chiari on an infant that there is nothing they can do about it.  Stating that we just need to take wait and see approach and see if symptoms develop as he gets older.  As of right now just has apnea, severe reflux, constant cough, some swallowing/choking issues, but otherwise developmentally normal.

Neurologist asked if I really wanted to put my child through an MRI and have him intubated with his history as there is nothing they could or would do with a chiari diagnosis at this age anyways and all they would be doing it for is moms satisfaction!

Please advise...mom going crazy and just wants answers from doctors who suggested this may be reason for apnea.

Thanks

Chiari's are funny things.

Infants are rarely put through surgery for a chiari unless it is quite severe, as surgeries for chiari's often mean repeat surgeries in the future.  Having been there and done that, if you can treat the symptoms and skip the MRI, then that's what I would do. We've been there and done that (and don't even have the glory of a shirt to announce it), and wouldn't do it again given a choice.  

It's up to you.  What does your pediatrician think?  What does your child's dad think? My husband is often the voice of reason when it comes to testing, especially when the docs and us disagree.

Tiffany Acuff

kellbell wrote:

Neurologist stated that if an MRI finds Chiari on an infant that there is nothing they can do about it.  Stating that we just need to take wait and see approach and see if symptoms develop as he gets older.  As of right now just has apnea, severe reflux, constant cough, some swallowing/choking issues, but otherwise developmentally normal.

Neurologist asked if I really wanted to put my child through an MRI and have him intubated with his history as there is nothing they could or would do with a chiari diagnosis at this age anyways and all they would be doing it for is moms satisfaction!

Please advise...mom going crazy and just wants answers from doctors who suggested this may be reason for apnea.

Thanks

Hi kellbell,

I find myself happy to be writing a mom with a good "lets find an answer" motivation.  That can be a bit like a wild horse, lots of energy and power but in need of training and direction.

As I read your post I flashed back to paper I read on the discovery of toxic mold affecting children.  In several cases they found that the children were placed near an air vent which was literally spraying the stuff on them as they slept. They found this because the child near the vent got very much sicker than the child further away from the vent.

If I were you I think I would spend some time studying each of the child's known symptoms and their possible causes and cures.  Then I would do those things which could be done now to strengthen the child against what could cause those symptoms (e.g. change in diet, test for allergies, check air quality, check water quality, check environmental temperature overnight).  You may find a good answer doing this and it will free up your mind to see further than you can now.

The doctor's advice sounds good to me.

My prayers are with you,

Todzo