Hello, I wanted to tell my daughter's story. My daughter is 13 yrs old. She was born healthy. I tried to nurse her but quickly became frustrated. Unlike my older daughter, she did not nurse well. I switched to the bottle and she continued to have feeding issues. We finally put her on the hypoallergenic formula and fed her in an upright position as much as possible. She spit up all the time! Then as a toddler she had bowel issues and Miralax was our best friend for years. Then came the sensory issues, ADHD, Pica, Asperger's, Alice in Wonderland Syndrome (yes there is such a thing), and general anxiety diagnoses. She spent a year and a half in occupational therapy for sensory issues and motor skills. She caught up on most of the motor skills and learned some coping skills for sensory stuff. We always carried ear muffs like they wear on the gun range because she could not handle noise. She complained since preschool that her hands hurt/cramped after writing for a few minutes. She tired easily and complained that her legs hurt. I was so tired of hearing "my head and stomach hurt". We spent years going to doctors including neurologists, had EEG's and other tests done. Everything would come back normal. Then in February of 2015 the headaches became daily. She could not function at school after a few hours. The principal would call and tell me to come get her. Her teacher told me that she could tell when the headaches would start getting bad. She said my daughter would become pale, her demeanor would change, and she would start rubbing her head. My daughter would finish her class work before asking to go to the nurse. We went back to the neurologist and he said it was migraines and gave us some medication. We tried the medication for a couple of weeks with no relief. Called him and all he would say is keep using the medicine and he would see her in four months. We started searching for a new neurologist and found one but we have to drive almost an hour to see her. Our first visit and she says "has no one done a scan of this poor child's head?" She was hired!! In early June, almost five months later, the MRI results came back. Chiari 1 Malformation with a 9mm descent of the tonsils. Then came the fun part, finding a neurosurgeon. The first one was a definite flop who said surgery would not fix or help her! Then July 1st we met with another surgeon in Dallas, TX who said he thought surgery was the only option. So on August 20th just a few days after her 13th birthday, she under went the 5 hour decompression surgery at Children's Medical Center in Dallas. That was the longest five hours of our lives. The surgeon did a posterior fossa decompression and opened the dura. She spent 24 hrs in ICU and was released after two days in a regular room. Recovery has been slow and hard at first. She missed the first semester of school but had a teacher who came to our house twice a week to help her. She has not had "one of those headaches" since surgery. Her hands and legs do not hurt anymore. She no longer wear ear muffs or complains about noise. She is a new kid, doing things that she never would have done before. She was withdrawn and shy before, but now she wants to be around people. For the first time she wants to go to school! Her principal is amazed at the difference and so are we. There are good stories and successful surgeries. She will always live with Chiari, but it doesn't dictate her life anymore! She has days that she just doesn't feel 100% but that is better than before. It has been exactly six months and we feel like we have definitely done the right thing! Sorry this is such a long post. The top is before surgery and the bottom is 4 months after surgery.
I am delighted to hear of your family's triumph over such a difficult situation. May your daughter continue to enjoy life!
Welcome :).
It is wonderful to hear how the surgery helped! :) I'm sure this story will help other parents, going trhough dark times, to see that their children can get better. :)