My youngest daughter is 10 years old. She is the youngest of 5 in our blended family. About a month ago, she quit talking. Not just because she was mad, she was unable to speak. That weak, we had 2 ER visits, a pediatricion visit, a pediatric neurologist visit, and pediatric ENT visit, and a psychologist visit. The following week, she quit walking. We were just sitting and watching a movie. At the end of the movie, she couldn't walk. We followed this with another ER visit, another visit to the psychologist, and a Psychiatric hospital visit. The hospital admitted her. She and I were both scared. My 10-year old who has had some pre-puberty 5th grade problems with attitude and backtalking the past few months errupted like a volcano. At the thought of being hospitalized, she threw the worst temper tantrum I had ever seen. This did nothing but confirm that maybe she needed the help they offered. I left her there. She began walking and talking that night. (Adrenaline is amazing!) She stayed for 2 days before being dismissed. I learned that insurance will not cover full-time hospitilazation for non-life-threatening conditions. Basically, is she's not suicidal, she needs to live at home - not in a hospital. I was OK with that. We continued to follow up on referrals and even investigated an in-home program that would come to our house 2-3 times a week to help her and our family. Before we actually began that program, she started passing out. This was scary. Two days later, the day before her MRI, she was spending the night at my brother's house because it's close to the hospital where her test was. We live about 1 1/2 hours away. She began having seizures, so we took her back to the ER. Here we came across a very unfriendly ER DR. who told us to just keep taking her psychiatric facilities. As I left the ER, my daughter passed out, had a seizure, and fell out of her wheelchair. That was our last ER visit. Since that time, we have enrolled her in an outpatient partial hospitalization program. She attends everyday from 8-3, which means about 3 hours of driving (daily) to get her to and from the program. She is now experiencing periodic hearing and sight loss. The pseudo-seizures resemble a full body seizure. Yet, we are told that to help her, we must stand back and not engage during these episodes. It is so difficult and heartbreaking to watch my daughter trapped by her own body, knowing we our powerless to help her. It's difficult to understand how she can overcome this on her own. Yet, that's what the Dr's tell us must happen. She has to find the will and resources withing herself to get better. We are now 6 weeks into this and have been told that it will get worse before it gets better.
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I have a similar story. My daughter is 11 years old and was recently diagnosed with a conversion disorder. She'd been a healthy and apparently happy kid. Then, eight weeks ago, she started vomiting, which worsened and eventually morphed into an inability to swallow -- not even water. This put her in the hospital with a feeding tube. In parallel with the vomiting she grew weak, and about a month ago she lost the ability to stand or walk. She has also developed severe pain all over. As in the story above, the doctors tell us that we need to step away from her. In our case, we can see her only an hour or two each day while she works on physical therapy to retrain her body. She is miserable and doesn't understand why we can't be there. She is also skeptical that physical therapy can help and I often get the feeling that she doesn't want it to work, just to prove the doctors wrong. It is wrenching.May 6, 2011 - 12:30pm
Happy ending to the story above: We were directed to the Pediatric Pain Rehabilitation Program at the Cleveland Clinic, and they were able to restore our daughter's health fully. She is now back at school, eating normally, running and jumping like other kids. The Cleveland Clinic program was amazing, and I urge other parents in similar straits to see whether it, or another of the handful of pediatric pain rehab programs in the country, might be suitable.October 24, 2011 - 8:43am
Did they treat for conversion or was there an underlying cause that the other docs didn't find?September 15, 2017 - 8:35pm
Could you please give me the name of the Drs you saw? My daughter is experiencing this now and I need help. Children's Hospital vans The Children's Institute were no help at all. She made a little progress at The Children's Institute by them getting her to eat again but as soon as she started to participate in PT, OT and with the psychologist we were sent home. I feel they didn't keep her long enough.January 1, 2016 - 8:42pm
Hi twprivette - It sounds like you've been through a lot, and have a lot of challenges ahead of you. One of our adult members was diagnosed with conversion disorder, and you may find some helpful information in this thread, which includes links to support groups and information about the condition. Good luck to you, and your daughter. PatApril 14, 2010 - 6:24pm