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Has your child been diagnosed with Chiari?

If you suspect that your child has Chiari or have been recently diagnosed, these pages may be useful in helping you understand the condition. Click on "Browse Pediatric" in the navigation bar to  find patient literature to help you explain to family, friends, medical professionals and teachers that may have a part in the care of your child.  You can also meet "real" pediatric patients, get connected to other parents on Facebook and find some hope from other children who battle Chiari everyday.

I do-I dont have chiari

Faces Of Chiari | Ollie

MatthewOllie's story- Oliver was a perfectly healthy 10 month old baby. All of the sudden in May he started getting really fussy would crawl or cruise anymore. In June he started to get worse, crying all the time and when he wasn't crying he was sleeping for 30 min at a time 23 hours a day. When he was awake he would cry in my lap or just lay there. I took him to three different doctors. First said he's teething and some babies are just grumpy, second virus, third ear infection. He was 10 months and he couldn't eat food at all without puking or gagging. He could no longer nurse without gagging. He finished his antibiotic for the ear infection and he was still so wobbly and just sick. I was like screw it there is something wrong, so I took him to the emergency room. The first emergency room said they were very concerned with his symptoms and his breathing (because it had been slow). They sent us via ambulance to UK pediatric hospital. There they did an EEG and found nothing. Then finally after 4 days there they sedated him for his MRI and spinal tap. After that they came in the recovery room and told us he had Chiari but it wasn't what was causing his symptoms. But they were sending us to the PICU because his breathing was only getting worse. We get to the PICU 20 minutes later. The doctor there said he didn't understand why we were there and he was going to send us back down to the floor. 10min later they were putting him on a ventilator because the spinal tap had caused problems with the Chiari. The immediately sent us to Cincinnati Children's Hospital via helicopter. He stayed on life support for 3 days when the finally weened him off. His official diagnosis was: Complex Chiari Malformation, hydrocephalus, and basilar invagination. July 2nd Dr. Vadivelu did his decompression surgery. It went great and we got to go home 4 days later after 2 weeks in the hospital. He is so much happier and smiling all the time now. AND LOVES food now. He will continue with speech and physical therapy. He will be in his neck brace for a year (till he is 2) and have another surgery for the basilar invagination. But for now, he is happier.