What is cerebrospinal fluid hypovolemia?

pediatric cases





Pediatric cases1)19 year-old man (College student)

Pediatric cases2)12 year-old girl

Pediatric cases3)12 year-old boy

Pediatric cases4)18 year-old man

Pediatric cases5)13 year-old girl

Case 2: Cerebrospinal fluid thrombocytopenia: from injury to diagnosis

My daughter, Moemi, was in the second year of elementary school when she quarreled with a boy in her class. During the quarrel, the boy suddenly kicked her on her back. I was surprised when I saw the footprint on my daughter’s back when she got home.

When I asked my daughter what happened, she said, “…I was kicked by ○○ [boy’s name]”. When I asked if she had any other injury, she said, “My neck hurts... I am nauseous too...". Later, I took her to an orthopedic clinic in the vicinity to have a medical examination. Within three weeks she was diagnosed with cervical spinal sprain based on the results of an X-ray. The doctor also used a poultice and bandaged her neck to help heal the injury. I contacted the school to report the situation and speak with the boy and his parents. However, since the injury was not visible, neither the school nor the boy’s parents considered this a serious issue.

Further, after two months, my daughter complained of a headache, and was admitted as an outpatient to the medical school. The physician who examined her said, “It seems to come from the stress... especially at the shoulders.” She was prescribed analgesic drugs. However, even with after six months following consultations with orthopedic specialists at other hospitals, her symptoms did not improve. We also visited an orthodontist to examine if her headache was due to the bite alignment of her teeth.

At the same time, I fell ill and was hospitalized, and my husband moved out for work in February. Given my poor physical condition, I also think my daughter could not talk to me about the bully who was in her class since third grade. Given her mental hardship, in addition to her physical illness, I arranged for her to have pediatric counseling once a month.

Thereafter, her headaches became more painful and were accompanied by dizziness and ringing in the ears. The main physician at the Medical University changed and arranged for magnetic resonance imaging (MRI), hearing test, EEG, and IQ test. Tests were also performed for orthostatic disorder. The results showed no abnormality. Since her IQ was higher than average, the physician suggested that her brain might be overworked and suggested that she get some rest.

By the time she started fifth grade of elementary school, she was starting to lose some visual acuity. The results of an ophthalmology examination stated, “The eyes of this child is not correct, the eye looks up to 1.5. The weakness in visibility might come from mental problem.” At the same time, Moemi’s physical fitness also weakened. She became tired easily, and would be more likely to complain of headaches and dizziness, and easily caught colds.

She was bullied at school since the other children thought it was all a sham. Although I talked to the homeroom teacher many times, there was no resolution. So, Moemi ceased to go to elementary school. Instead, we decided to transfer her to a host institution of truant children in the A City Board of Education, ‘Yukkurasu,” for sixth grade. I was convinced that her school was the stressor that was the primary cause of her symptoms, including headache, dizziness, and lapses in concentration. However, these symptoms continued even after she was transferred to Yukkurasu and she was diagnosed with attention-deficit hyperactivity disorder. Although most of the faculty members and students were very warm and welcoming, her physical education (PE) teacher said that Moemi could be hostile and forced her to participate in PE classes even when she had a severe headache. However, Moemi was able to get through school owing to support from her homeroom teacher, school nurse, and students who defended her.

At this time, in addition to headache, she also presented with dizziness, ringing in the ears, sleep disorder, mild taste and smell disorder, and body temperature regulation dysfunction. Moemi started to say that she, “…might have personality disorder...”

She was then diagnosed with depression and juvenile menopause. Her eyesight decreased to 0.1 or less and she needed to wear glasses. From my viewpoint, her symptoms could not be attributed to a mental illness alone. Although most children tend to forget pain when they are enjoying themselves, my daughter always complained of a bad physical condition even she was enjoying herself. She also did not show the usual signs of depression, i.e., dilated pupils and lack of facial expression.

Since the neurosurgeons and orthopedic surgeons did not have clear diagnosis, we tried both Western and Oriental medicine. When my daughter was told her posture was bad I took her to the Osteopathic Council for chiropractic treatment. When I heard that aromatherapy might be effective, I went to Sapporo to study aromatherapy. However, none of these were successful. When her eyesight decreased further to 0.03, her other symptoms worsened. She had also lost her appetite and would only eat white rice balls. She drank hot tea during midsummer since cold tea tasted sour. The control of her body temperature also continued to malfunction and she wore a sweater even in summer.

There was no improvement in symptoms; however, through my search on the internet, I was able to find a possible diagnosis: spontaneous cerebrospinal fluid (CSF) leak. On a questionnaire for self-examination, 48 out of 50 items were true. We still could not find a hospital to confirm that diagnosis. However, I found a patient's blog on cerebrospinal fluid thrombocytopenia on the Internet, while I was looking for specialist treatment. Then we finally arranged an examination by Dr. T, during the winter break in March, who confirmed the diagnosis half a year after our self-diagnosis.

Overall, it took eight years since my daughter first presented symptoms, and six years since the examination at the medical university, to obtain the diagnosis of spontaneous CSF leak. As a parent I regret that we could not do more. However, although it took a long time to reach a diagnosis, I felt like I had won the lottery because it meant we could now obtain specialist treatment for my daughter.

Since there may be other people who also have the same symptoms with no diagnosis for a long time, I would like to share our story so that they will know about this disease.