Carrie’s Story

My journey started long before I got to Nationwide so I will start with some background.

When I was 9 I broke my ankle. This turned into Reflex Sympathetic Dystrophy, a nerve condition that causes severe pain. My dad explained it to me as having little people in my brain (nerves) that are confused so they keep sending bad signals to my body. The injury heals but the nerves treat it like it hasn’t. A year later I started having symptoms that didn’t make since for RSD (movement issues and vomiting/abdominal pain).

Fast forward 8 years of being told I’m faking, it’s psychological and numerous painful and devastating ER trips and hospital stays. In ’09 I was told I had a malrotation and needed emergency surgery. This occurs at birth when your intestines are basically twisted. They’re rotated the wrong way. After surgery I was just getting worse. I spent months in the hospital. I got a PICC line and a feeding tube. I couldn’t sit up, swallow, eat, pee without a catheter, or do anything for myself.  They went back to psychiatric. A social worker told my dad she thought I was possessed.

Then I was told I was being transferred to Ohio, over 700 miles from my home state of Arkansas.

The doctors at Nationwide Children’s Hospital welcomed questions instead of rushing in and out. The nurses were patient and willing to help.  Dr. Carlo Dilorenzo ran a bunch of tests. The conclusion was Rumination Syndrome. They explained it as the same thing as cows chewing their cud. I swallow and unconsciously regurgitate. Dr. Anthony Alioto, a psychologist on the GI team, worked with me on retraining my body and brain to accept food. Soon I was able to have my PICC removed and just used my tube to supplement.

But they didn’t stop there. My physical condition was still poorly. They said they couldn’t send me home like that and sent me to the rehab unit. They diagnosed my other issues as Conversion Disorder. This was what Arkansas had said for years. They explained it different though, saying its the UNCONSCIOUS act of the brain converting stress into physical symptoms NOT faking.

Rehab was hard and there were days I hated my therapists. 8 hours a day of PT, OT, RT, and psychology. Anthony and Dr. D continued to check on me because they cared not because they had to. I had a goal mountain so I could see my progress and each week I got stars for my door with encouraging notes from my therapists.

Six months later I was walking, talking, eating, independent, and graduated rehab!

Nationwide did what no one had ever done for me. They believed me and believed in me. Conversion disorder isn’t a well understood condition but the staff at NCH are willing to take on even the most challenging of cases. I can not express how grateful for Nationwide Children’s Hospital and the Ronald McDonald House that let my dad be with me. My therapists, Rochelle, Suellen, and Courtney are my forever heroes.

http://nchflutter.wpengine.com/wp-content/uploads/2016/06/professional-photo_0001-e1466696299974.jpg
  • Name: Carrie W.Carrie White
  • Condition(s): Rumination Syndrome
  • Age at Treatment: 17
  • Age Today: 01/18/199226 Years

My journey started long before I got to Nationwide so I will start with some background.

When I was 9 I broke my ankle. This turned into Reflex Sympathetic Dystrophy, a nerve condition that causes severe pain. My dad explained it to me as having little people in my brain (nerves) that are confused so they keep sending bad signals to my body. The injury heals but the nerves treat it like it hasn’t. A year later I started having symptoms that didn’t make since for RSD (movement issues and vomiting/abdominal pain).

Fast forward 8 years of being told I’m faking, it’s psychological and numerous painful and devastating ER trips and hospital stays. In ’09 I was told I had a malrotation and needed emergency surgery. This occurs at birth when your intestines are basically twisted. They’re rotated the wrong way. After surgery I was just getting worse. I spent months in the hospital. I got a PICC line and a feeding tube. I couldn’t sit up, swallow, eat, pee without a catheter, or do anything for myself.  They went back to psychiatric. A social worker told my dad she thought I was possessed.

Then I was told I was being transferred to Ohio, over 700 miles from my home state of Arkansas.

The doctors at Nationwide Children’s Hospital welcomed questions instead of rushing in and out. The nurses were patient and willing to help.  Dr. Carlo Dilorenzo ran a bunch of tests. The conclusion was Rumination Syndrome. They explained it as the same thing as cows chewing their cud. I swallow and unconsciously regurgitate. Dr. Anthony Alioto, a psychologist on the GI team, worked with me on retraining my body and brain to accept food. Soon I was able to have my PICC removed and just used my tube to supplement.

But they didn’t stop there. My physical condition was still poorly. They said they couldn’t send me home like that and sent me to the rehab unit. They diagnosed my other issues as Conversion Disorder. This was what Arkansas had said for years. They explained it different though, saying its the UNCONSCIOUS act of the brain converting stress into physical symptoms NOT faking.

Rehab was hard and there were days I hated my therapists. 8 hours a day of PT, OT, RT, and psychology. Anthony and Dr. D continued to check on me because they cared not because they had to. I had a goal mountain so I could see my progress and each week I got stars for my door with encouraging notes from my therapists.

Six months later I was walking, talking, eating, independent, and graduated rehab!

Nationwide did what no one had ever done for me. They believed me and believed in me. Conversion disorder isn’t a well understood condition but the staff at NCH are willing to take on even the most challenging of cases. I can not express how grateful for Nationwide Children’s Hospital and the Ronald McDonald House that let my dad be with me. My therapists, Rochelle, Suellen, and Courtney are my forever heroes.

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