Chiari Malformation in Infants

[SummerRuth]

My son, who is 7 months old, was recently diagnosed with Chiari Malformation. The diagnosis was confirmed on Mar 10, 2014 and he was also diagnosed with hydrocephalus. Anyone have this happen with an infant? I'm trying to figure out what the next steps are in the event of an increase in fluid and pressure. He also is having to see a pediatric eye doctor to check the eye pressure in his eyes.

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry and as CW mentioned above wish there was more we can do, other then offer a shoulder and listen.

What we suggest for older individuals is to get to a true Chiari specialist...u will need a pediatric Chiari specialist...and to get to one u may have to travel.

We do have a list of Drs that the members here have been to, treated by and liked....however the list is not a referral. nor an endorsement for the names listed...it is just a starting point for u to research to find the right Dr for u and ur child.

Make sure they do test him for sleep apnea....this is many times overlooked and is very very important for everyone but especially children and infants.

Do u know which came first? The hydro?....as that can cause the cerebral tonsils to herniate.....

I know this is a very scary and frustrating time, the best thing u can do, is what u r, reaching out and educating urself on these conditions so u can make an informed decision for ur son.

Know u r not alone, and we will support u and help get answers to ur questions the best we can.....I know we have had a few children represented on this forum by parents, but I do feel urs may be the youngest that I remember.....that said there are more informed Drs in treating these conditions today, it is a matter of locating and traveling to them.

Check ur INS to see what type of coverage u have....and get copies of ALL testing done on ur DS....MRI's on disk and reports...blood labs etc....it will make getting a 2nd or 3rd opinion faster and easier.

http://www.medhelp.org/health_pages/list?cid=186

[ChiariWolf]

I truly wish there was something I could share with you. However, I really have no knowledge of how to help such a young life.

I couldn't help not writing just let you know there are people out here who care. And people whose heart truly bleeds not just for your dear son but also for you. Bless you for being such a caring mother. Hugs to your son...

CW