Discussions By Condition: I cannot get a diagnosis.

My baby daughter's weird episodes

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: jessfiness09
  • December 29, 2008
  • 02:07 AM

My daughter is 9 months old, and was recently in the hospital for four days. She woke up one morning and was not her usual bouncy cheerful self. So I picked her up from her laying position and her head lagged. It was severly leaning to her left side and she could not support it. Her left arm was also very stiff and her wrist was turned the wrong way. I tried to sit her up but she fell over. I was able to rotate her head from side to side but when I tried to tilt it back straight she started to cry. I laid her back down and even though she moved her legs and hands she was very lethargic and unresponsive. She slept a full ten hours and is usually very hungry when she wakes up but she did not want to eat. When she was 6 months this exact same episode happened when she woke up and it lasted for about 3 hours. By the time I got her to the doctor she was back to her normal self and her doctor said she might've had a seizure but there was nothing else he could do.
This time it happened I took her to the ER where they admitted her on seeing the symptoms for themselves. They immediately took blood and urine samples, x-rays, and spinal tap, and a CT scan. She was then transferred to a hospital with pediatic specialists where they gave her an MRI, more blood tests, and an EEG test. Everything came back negative and she was released once all the results came back. When she was 2 months old she was diagnosed with torticollis and that was corrected with physical therapy by the time she was 6 months, but she was showing signs of developmental delays so she was referred to an early intervention program. She has never or even attempted to roll but she does somewhat try to crawl. She just started trying to stand on her own, but she collapses a lot. However she sat up on her own by the time she was 5 months old. Other things I have noticed about her is that she has sudden outcries in her sleep a lot but she's never awake, she holds her hands tightly in fists a lot, and one thing I've been afraid to mention to doctors is that she turns her wrists the wrong way on several occasions. I have done my own research about her symptoms but I've came up with things as serious as spinal muscular atrophy to epilepsy to torticollis. The doctors kind of left me a little clueless because I don't even know what to do when she has another episode. I'm worried because rare diseases run in our family and it would be nice to find out something to put my mind at ease.

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