Every illness has its own story, and Lika's began with a small, unexpected detail. While she was breastfeeding at the maternity house, she stopped breathing for several seconds. Usually brief stops of breathing among infants are completely normal, but in Lika's case it was followed by the loss of her voice. Doctors considered this suspicious enough to send her to Hospital. Lika's family started struggling to get a correct diagnosis.
As she grew older she seemed slower than other infants to reach motor milestones like sitting and crawling. The first emergency occurred when she was crying. Lika was 7 months old. She again stopped breathing and suffered severe muscle weakness and fatigue. The muscles of the face and eyelids were affected. "She had droopy eyelids," recalls Lika's mother Oksana. The respiratory muscles also affected and severe respiratory weakness- called myasthenic crisis -developed.
This episode scared Lika's parents. They took her to the hospital again, where a first-time diagnosis of myasthenia was given.
According to Gia Melikishvili, a children's neurologist, it is quite difficult to differentiate among various forms of myasthenia. Many children are mistakenly given a diagnosis of auto-immune disorder myasthenia gravis instead of congenital myasthenia. The most important distinction lies in treatment approach; myasthenia gravis requires many years of immunosuppressive therapy that causes many side effects.
Lika's case was an example of such misdiagnosis.
Lika was one year old when doctors subjected her to long and unnecessary immunosuppressive therapy before finally making a precise diagnosis.
"At first we refused to give prednizone, ant-immune medicine, because of its side effects," says Lika's mother Oksana, but doctors strongly insisted to the parents that if Lika didn't take the medicine, they could not guarantee her well-being, and that she might not be able to walk and that the crisis could become more severe and happen more often. "Finally we obeyed," said Oksana . Lika started drinking prednizone.
But after three months she had another crisis. It developed after Lika's first immunization. Mostly the crisis used to come after emotional stress. "We were trying not to distress Lika, but it was impossible to manage all the time," said Oksana. They took Lika to Dr. Melikishvili for consultation. "God has sent him to us," says Oksana.
Dr. Melikishvili offered to determine the diagnostic problems using the "MD-Partners" network, an informal network of healthcare professionals, created to improve the quality of health care in Georgia by getting support from colleagues from various fields of medicine in different countries using internet resources and telemedicine tools.
Melikishvili and his Georgian colleague Givi Javashvili, Medical Director at the JSC "Curatio medical group", head of family medicine department at the State Medical Academy, another Georgian MD Partners Network member, started acting to help Lika to get correct diagnosis and treatment. They searched the world wide web to find out experts and labs in this field. After the identification of a such center they contacted Ricardo A. Maselli, Professor at the University of California Davis, CA, U.S.A. According to Javashvili, Proffessor Maselli has kindly offered his help.
The possibility of misdiagnosis of different diseases especially rear diseases, is bigger in Georgia than in the West. Reasons lie in lack of specific experience and expertise in new technologies and approaches in medicine among doctors. According to Javashvili, Often the problem is interpretation of results of high tech investigations. Also still, there are certain types of technologies or even whole directions that are underdeveloped in Georgia.
According to Kenneth Walker, professor of medicine at Emory University, a leading school of medicine in the US city of Atlanta, "Georgia health care's great weakness is available technology"
Walker has volunteered a significant amount of his time over the past 14 years developing effective programs for the Georgian health care system. Walker is a member of MD-Partners.
The establishment of the network began between physicians from Georgia and the Netherlands after discussions that took place in January 2004 during Melikishvili's visit to the Department of Child Neurology at University Medical Center Groningen in Netherlands.
"From the beginning he was very keen in establishing all kinds of professional collaborations," recalls professor Oebele F.Brouwer, a child neurologist at the University Medical Center Groningen.
According to Brouwer, this method of exchanging thoughts and opinions might become very useful, especially in countries like Georgia where resources are still limited. Such a system might help colleagues get access to even expensive technology.
In Lika's case a diagnosis of congenital myasthenia-rare disease was suspected, but verification of this disorder is possible only at a few centers in the world.
According to Melikishvili , there are only two qualified laboratories in the US for this disease, and one of them performed the investigation for Lika free of charge. American colleagues paid even the shipping charge for delivering the diagnosis," says Melikishvili.
Since the establishment of the network, 12 cases were examined Most of these were cases when children from underprivileged and vulnerable groups received specific care. Highly qualified medical professionals from the US, England, Germany and the Netherlands provided consultations and support to Georgian patients, says Melikishvili.
According to Walker, many patients have problems that are solved. Usually a patient comes with a complaint and it is obvious what needs to be done. Other patients often come with more complicated problems where it is not clear what needs to be done, and in this case to have more then one consultant is extremely valuable. "What this project makes available to Georgian patients is the best medical thinking that can be obtained anywhere in the world," said Walker.
Givi Javashvili explains the technical procedures of the communication:
Melikishvili and Javashvili collect information about the patient and write a case study that includes photos, video or other visual material about a patient. Information is confidential. Only network members have access to the information using username and password system.
The case study is followed by questions to the MD partners. In Lika's case, the question was whether to withdraw prednizone or continue immunosuppressive therapy.
Information on patients that illustrate difficult diagnostic and therapeutic decisions is placed on the web site and specialists from other countries can then see this data and make recommendations to Georgian physicians such as what might be considered for diagnostic and therapeutic intervention.
According to Walker, Melikishvili and Javashvili have shown a great deal of creativity in setting up this project. He says that what the two of them have put together makes use of most modern information technologies and provides the best critical thinking available to the patients of Georgia .
Walker thinks the Georgia health care sector's great strength is its people. "Georgia has highly-motivated people who quickly get new concepts. They are very bright. They are people who love people. They and I share the same values," said Walker.