My 12 year old daughter has been sick since February. It started with what seemed to be the flu which went away. about
a week later, she had a severe headache, sensitivity to light and difficulty walking. Her neuro diagnosed her with acute cerebellar ataxia. Her walking improved after a few weeks, but the headaches persisted. She also has paranoia and feels like she is being watched. Therefore, I am unable to leave her alone. She has missed almost 3 months of school. She was an honors student with many friends and her life has been turned upside-down.
Morphine and toradal have been the only medicines which have given her relief. She has had two lumbar punctures, one CT, 2 MRI's and recently a colonoscopy and endoscopy for what appear to be the beginning of ulcers. The first mri was normal but the 2nd showed evidence of lesions in the white front matter which indicate the possibility of a migaine, ADEM, Lyme's, among other conditions. In the beginning stages of her illness, she had elevated titers to Lyme which were considered equivocal. The LP did not find any evidence of Lyme. Her blood work is now with the California Encephalitis project where the test reflected elevated titers to mycoplasma. We are awaiting a 2nd test to see if she has Igg titers to mycoplasma.
THe GI doctor thought she had a H. pylori bacterial infection, but the biopsy turned out negative. There are not many resources on the internet about mycoplasma, but I have read that it can cause gastrointenstinal problems. If the GI suspected an infection, and it was not H. Pylori, can it be mycoplasma? The GI doctor says it is doubtful, but what is the source of the infection in the first place?
Brianna was on steroids at first which did not help her headache. She is now on beta blockers which do not seem to be helping. She also has joint pain, numbness in her fingers, fatigue, and is becoming more depressed each day. Her doctors want to just experiment with different medications until we find out what works. The worst symptom is her headache and she does not want to leave the house.
We are at our wit's end and want her better. We are considering some alternative treatment such as hyperbaric oxygen therapy and acupuncture.
I would appreciate any feedback and/or suggestions about her condition. Thanks in advance!