Children and MS

solominka #3, March 2009. alpha and omega talk

On February 3, neurologist of the Research Children Health Centre at the Russian Academy of Medical Sciences (RAMS), Olga Bykova, PhD, visited the city of Voronezh. Dr Bykova has been engaged in treating children with multiple sclerosis for over 12 years. In our talk, Dr Bykova told us about difficulties and new opportunities in diagnosing and treating children for MS in Russia.

— According to provisional statistical estimations, 5% out of 150 thousand Russians with MS are believed to be children, which means 7,500 patients aged from 16 to 17 should be under neurologist supervision. In reality, specialist doctors supervise just 300 people. I wonder where the others are… 

The lack of information about medical qualified help rendered to persons with this severe illness has resulted in that mere 1% of children are supervised by experienced physicians. The Research Children Health Centre at RAMS provides consulting assistance services and medical care to every Russian child-patient. However, we often witness things happening as follows. The parents of a child-patient resort to advertised services, in their search for specialists they go online and find witch-doctors, who promise to cure MS, resulting eventually in the parents’ enormous money thrown ‘out the window’. Patients would be happy to go anywhere – be it even a foreign country. In our experience, there were patients residing in our vicinity, who had learned about our services from professionals being abroad, yet the description of the activities of the Research Children Health Centre at RAMS can be found on the Internet.

Sadly, we lose precious time to timely start therapeutic intervention. Problem two for Russian patients is incorrect diagnosis. The third one is a common error of physicians, that is, diagnosis as a verdict for an incurable patient. I admit there isn’t a cure for the disease found yet, but there are medicines today to encourage long remissions in patients, as well as to reduce or alleviate exacerbations, which help patients to significantly ‘postpone’ disabling symptoms.

— What do the parents need to do if their kid has MS?

— Children with MS tend to be teenagers, so intimate and confidential contact is essential in dealing with them. The child himself will let his problems out, but serious aspects must be confided in a professional only. The important thing for the parents is not to ignore complaints and manifestations of the disease, but reminding of the disease constantly may irritate, and, furthermore, orienting the child that he will have a severe disease in the future is unacceptable either.

— Sometimes a mother with MS cannot stop seeing MS symptoms in her children. In your experience, is the heritable MS a common thing?

— We have seen cases of ‘supposed heritable disease’ in patients. Actually in families, where one of the parents has MS, prevalence of MS as a hereditary disease is quite moderate. We can see a child with MS, whose parent also has it, a little more often than in populations on the whole. Even though MS comes again, one shouldn’t make the child’s life a burden in advance. If you notice MS symptoms and it makes you nervous, you may let your child undergo MRI-scanning once every three years. But you really shouldn’t search your child for MS signs and diagnose them on your own.

— Are children prescribed high-priced pharmaceuticals being on the 7 nosologies list (the state-run programme to provide people with severe diseases with expensive drugs, including DMDs for PwMS - *translator’s note)?

— Yes, we do prescribe the medicines tested in teenage-children and approved, nevertheless the therapy (i.e. injections and side-effects) must not be more severe than the disease itself. Another significant problem we have is that we do not have tenders to include pharmaceutical provision for children on the 7 nosologies programme. This should be an initiative coming from regional agencies; no data in hand means no assistance for children.

Provided there are quotas in regions, then, we hospitalize a child, with the parents’ consent, in Moscow. The child undergoes additional examination there, has his diagnosis elaborated, and his/her therapy commences under our and the parents’ supervision. We dispense medicines for a short period of time. Should the relevant agency in their region not be able to provide them with the medicines, we provide the medicines for a 3-month period.

The Research Children Health Centre at RAMS has all necessary diagnostic equipment, and there are professionals to treat Russian children with multiple sclerosis, who need help.