Discussions By Condition: I cannot get a diagnosis.

My 12 year old has been sick for 3 years!! Any suggestions??

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: tpeters78
  • November 19, 2013
  • 02:49 AM

3 years ago in June, my now 12 year old daughter started complaining of headaches. Her head hurt every day for a week. Took her to the drs and they did a lyme test and said to follow up if she is not better in a few days. This was on a Tuesday. That Friday, my daughter was so sick that she was barely able to get off the couch. She was lethargic, still had the headache, and had nausea. We took her to the emergency room and told them about her appointment on Tuesday. They did some blood work and a spinal tap. They also called the family doctor to talk about the appointment on Tuesday. The conclusion was they said she had lyme meningitis and transferred her to a pediatric hospital that dealt with this. She was there for one week, had a picc line with antibiotics for Lyme disease, and sent home. Almost a week after being home, we were back in the hospital because her salt levels had gone down and she was not able to sit or stand without almost passing out. We were there another week and released. A few days later we were back in because she had an allergic reaction to the IV antibiotic. After all that, she finally seemed to be fine. Until that November. She started complaining of headaches again. Took her to the dr, they considered migraines and put her on medicine. Then she started getting upper back pain. They sent her to physical therapy and gave her a TENS unit. None of this helped. 3 years later, we have seen 2 infectious disease doctors, neurology, neurosurgeon, rheumatology, cardiology, orthopedics, and we are getting ready to see a GI dr on Monday. They have tried antidepressants, muscle relaxers, naproxen, stomach medicines. Her current symptoms are headache, nausea, back pain, dizziness, stomach pain. She is sick every single day with some or all of these symptoms. Any input would be GREATLY appreciated!!! She is so frustrated and I feel so helpless.

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  • Look up postural orthostatic tachycardia syndrome (POTS). It primarily effects females and starts in the teens and not enough Doctors know about it.
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