the life of every child there are many special times-
The first step, the first word, going to school, riding a bike, and the list could go on. For some children these milestones happen right when parenting books say they should and some happen early or late. When most parents are comparing their children to other children of the same age, Becky Capps knew that something was wrong with her granddaughter Alexis. As for Alexis things happened late, very late.
Alexis did not make baby noises. She was very quiet even as a toddler. At the age of 12 months Alexis was not walking and was just beginning to babble. Alexis had many ear infections by this time and at the advice of her doctor was taken to an Otolaryngologist. Dr. David Wilson suggested that Alexis have tubes put in her ears and her grandparents agreed.
Alexis did not walk until she was almost 15 months old. Becky was still worried that Alexis was not talking so she contacted the Hopewell Center for an Early Childhood screening. Alexis was eligible and at the age of 18 months started receiving speech services. Even though they were right about her speech delay, little did they know the extent of Alexis problems.
Alexis speech therapy was started at 3 sessions a week for 30 minutes each session. Alexis liked the therapy but was becoming frustrated. One of the speech teachers determined that Alexis had Apraxia. Apraxia is when the brain can not make the muscles in the mouth move correctly. Due to Alexis frustration the teacher began teaching Alexis and her family simple sign language for communication. This was a great idea. It helped her parents to know what she wanted and helped the frustration problem.
At the age of 20 months Alexis was adopted by her grandparents Becky & Bill Capps. At the age of 2 years the family doctor referred Alexis to Riley Children's Hospital in Indianapolis, who then ordered and MRI of Alexis brain. At the age of 2 ½ Alexis was diagnosed with Chiari 1 Malformation with a 6mm compression. Chiari is when part of the brain goes into the brain stem and is crowed and can not function properly. Alexis only had a few symptoms at that time so it was suggested to her parents to do nothing at this point as he felt that the Chiari was not part of her delays.
Alexis continued her speech therapy and by the age of 3 she was saying about 30 words and signing some words. At the age of 3 Alexis was no longer eligible for Hopewell Services and was able to attend the Elwood Community School Corporation Preschool. Alexis began talking more and had progressed so well that she only need speech sessions twice a week for 20 minutes each session.
By the time Alexis was 5 years old Becky had done a tremendous amount of research on the internet and Alexis was having a lot of symptoms which included vomiting, diarrhea, headaches, and swallowing problems. Alexis hands and feet would tingle and go numb and she had constant head itching. Becky decided to find other people and children who have Chiari and try to get suggestions on what would be best for Alexis. After much advice and giving it a lot of thought, Becky and Bill decided that they would ask the pediatrician to refer Alexis to Dr. David Frim in Chicago. The pediatrician first referred Alexis to a Neurologist in Indianapolis who ordered another MRI. The results showed that Alexis Chiari was now 11 mm. Alexis was then referred to Dr. Frim. Dr. Frim said Alexis need surgery to decompress her brain but he wanted a new MRI done with the brain and full spine to check for a Syringomyelia. If Alexis has Syringomyelia he would fix both things at the same time.
Alexis did not have Syringomyelia and her surgery was scheduled for October 29, 2003. The surgery went great. By day two Alexis was in the play room at the hospital and by day 4 she was on her way home.
At a check up appointment Dr. Frim said that Alexis had gotten well faster than he has ever seen. Alexis has continued to do great and will have another check up in February of 2004. She is being home schooled this year and will attend 1st grade in August 2004.
If you'd like to send an e-mail to Alexis or her parents, CLICK HERE. Correspondence is appreciated.
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