I'd like you to meet my AMAZING son, Christian.  Christian  was born on October.12.2000 at 7lbs 4 1/2/ oz., and overall, he was healthy. He was born with hip click,which is were his left hip would pop in and out of place,so he was in a harness type thing for the first few months of his life,and he had a heart murmor,which had to be watched by echocardiagrams,but it wasnt considered serious.

He has had asthma his entire life,which he has battled pretty well,he has had pnumonia numerous times,but alwasy seems to do great and get through it.

Christian grew normal and developmentally great and still has to this day.He had no problems until about January, 2005, at which time  he started having really bad headaches. We took him to the pediatrician and she just suggested tylonol and watch him over a long period of time and after so long with no break, she sent him to an eye specialist to rule out that it was his eyes causing his headaches. In April, 2006, after problems with his eyes was ruled out, she finally ordered a catscan w/ contrast and it came back totally normal.


From there she ordered an MRI of the brain done at Kosair Childrens Hospital in May 2006. It came back abnormal and she sent us to see Dr Moriarty in Louisville, Ky and he diagnosed Christian with ACM 1. A word that was totally foreign to us.

I did alot of research and found alot of help and support through the Wishes and Rainbows website and the Yahoo Chiari groups.With out that I dont know were I'd be.. HONESTLY!!! Christians decent was 11mm and the Nurosurgeon ordered  decompression surgery.

Christian also had no gag reflex at all.We went for another mri,this time of the spine on August 8th 2006 at Kosair and thankfully it came back good.We saw Dr. Moriarty again on Aug.23,2006 to discuss the surgery and it was scheduled for SEPTEMBER 22,2006 st Kosair Childrens Hospital in Lousville, Ky. We spent 24 hrs in I.C.U and 24 hours in a regular room and went home on day 3.

I could not ask for a better Dr.or place for my child to have gone. They treated us great, and he did great.Christian got his stitches out on Oct 4,2006 and returned to kindergarten on Oct.9, 2006 --- and he is doing GREAT. He has been headache FREE ever since the surgery.

He now has some other issues we are dealing with, but we are not sure they are Chiari related. He went for an ultrasound of his kidneys and bladder on Nov 17, 2006 and it came back abnormal, so now we go Monday Nov 27 2006 for a V.C.U.G  at Kosair to see exactly what's wrong.The dr's are saying maybe he has reflux of his kidneys. Im clueless.We also have to see an urologist, but not sure exactly when.

Christian had the vcug done and it came back that he has stage 2 kidney reflux but not being treated right now. he see's a urologist a few times a year to see how he is doing. they put him on a 4c's diet.. no caffiene..citrus..chocolate..or carbonation.
He did ok, but thats just to much on a 6 year old.

He has been doing good with his chiari since his surgery,but about a month ago his headaches returned.. but only every once in a while.. thank God.. and not as bad as before. He is doing great in school and graduates kindergarten on May 24,2007.

His neuro ordered an MRI when his headaches returned and it came back good; no bone has grown back.. THANK GOD!!!!!. as you know i was diagnosed and had decompression myself on March 6th and I'm doing good as well. Christian's pediatrician is checking into the Ehlers Danlos Syndrome (EDS) and wants to have him evaulauted. Im pretty sure he has it.. he has all the symptoms.. as far as brusing really bad and really easy and also the double jointedness.

He goes back to the neuro on May 22nd for a follow up.. so I'll keep you informed. Thanks to everyone for reading our story, and the help and support from all.

Misty Chism