Discussions By Condition: I cannot get a diagnosis.

My 7 yr old is sick. no diagnosis help!!!

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: bstroeb
  • June 25, 2008
  • 09:15 PM

Before Feb of this year my 7 year old daughter was a very active energetic child. She was in gymnastics and was so energetic that it was difficult to get her to go to sleep at night. In mid Feb 2008 (Mardi Gras day) she became very lethargic. She started taking naps during the day as well as sleeping all night (10 – 12 hrs a night). We weren’t alarmed by this but thought she may just be tired. Within a few days she went from taking cat naps to extreme exhaustion. She slept 12 hrs at night, slept on the way to school in the morning, slept during school, slept on the way home, and slept in the evening. Basically she could barely stay awake. We took her to the hospital at around day 5 of the sickness when her teacher had to catch her from falling as she looked like she was passing out.

The hospital ran a bunch of blood tests and an MRI and everything came back fine except for a positive ana result and her thyroid levels were a little low (not alarmingly low). They couldn’t find anything significantly wrong with her so they sent us home. We thought maybe she had a virus but she didn’t have a fever throughout this entire sickness. She has no rashes of any kind but had achy knee pain for the past year in one knee.

After a couple weeks past we started to notice her having problems walking and talking (the exhaustion still remained). She would have to hold on to us while walking and had a real shaky voice when talking. This problem was sporadic. One day she would walk/talk find and the other would be shaky. Whenever she laughs she falls down. When she laughs she looks drunk. I ask her how she feels when she gets shaky and she says it feels like she has to sneeze. We then took her to the hospital again.

This time we stayed in the hospital for a week. They had every type of doctor run all kinds of tests as well as a spinal tap. Every test came back fine with the exception of a positive ana and a slightly low thyroid level. The Rheumatologist ruled out lupus and the neurologist only came up with a theory of cerebral ataxia.

We took her to another doctor who ran tests for strep and found extremely high levels of DNase B which showed that she had strep at one time.

It’s been 5 months now and she is not getting better. However, she is not getting worse. It’s been the same sporadic walking/talking episodes and the extreme exhaustion continues. The infectious disease doctor ruled out west nile of various types, cat scratch fever… and has her on a 3 month plan of penicillin. We are really worried! She has had more blood work done than I can list here. It all comes back normal. I want to find out what’s wrong so I can get my daughter back to normal. She is not herself anymore. She has gained 12 pounds and is completely inactive because of this sickness. She has also become very angry and still has problems walking/talking. However she still has normal brain function. She can do reading and math just as well as before the sickness.

Please help!

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