The parents of a 6-year-old boy with PANDAS syndrome are asking health authorities to set up a protocol for treating the disease in Bulgaria. The mother sent a letter to the Ministry of Health. It was received, but there is no reply yet.

PANDAS is a rare disorder in which the immune system attacks the brain instead of the infection. The mother said of the illness: "This disease is treated as a disputed one, and only up to a point."

The parents first noticed changes in the boy's behaviour two years ago. The mother recalls: "He became more aggressive, more restless, lost his concentration. Later came tics, refusing food, sleep problems."

The family met with indifference, and some doctors put the symptoms down to growing up, the parents say. The diagnosis came after a period of uncertainty. The mother did not give her son the antidepressants that were prescribed: "We were prescribed antidepressant therapy. As a mother, I did not accept that."

Treatment with antibiotics and immunoglobulin did not work. The boy then had plasmapheresis in Turkey.

The father recalls talking to the boy: "We had explained to him that we need to treat his little head, that something is stopping him from being the same again. He took it all quite bravely, there was no crying, nothing."

The boy improved after the plasmapheresis, but only for a short time. The symptoms are now worse than ever, the parents say: tics, lack of concentration, short-term memory problems and more.

The family has sent enquiries about treatment abroad. The father said: "The Ministry of Health should bring in some protocol, so this disease can be treated in Bulgaria and not abroad, because it is quite difficult."