Medical aspect of children with special needs

Complexity of the problem: In the article published last week, I addressed the concept related to disabled, handicapped and autistic children with special needs. This domain of childhood health problem is large and has received considerable attention in the media. Such publicity created an aura of importance, portraying the problem of children with special needs as highly prevalent in Oman. The message that these children require supportive care and “early intervention” seems to be the desired modus operandi. This notion portrays the supportive services are the main thrust of the needed and provided care, presumably because medically all that is possible, has been done. There appears to be enthusiasm in the community to provide supportive services to these children and that is laudable. This is well taken but such assumption may not reflect the reality and should be questioned. The notion is fallacious and potentially dangerous because it creates complacency and ultimately results in disservice to many patients and their families. The issue I am driving at is that, there is no doubt that supportive services provided to these children are great and much needed. At the same time however, the question to ask is: “are supportive services all we can offer or, are there other, additional services these children may benefit from?” The answer is a resounding “yes!” There is much more one can offer, but in Oman, the needed medical services are still in the embryonic stage of development. What other services should be offered? The conditions of handicapped or children with developmental delay are usually taken at face value wherein there is little or no concern about their underlying medical conditions. The sombre reality is that in most of these children we do not know what is basically wrong with them. In vast majority, medically very little has been done to arrive at a proper diagnosis responsible for their mental or physical handicap. This is a fundamental and serious flaw and in most countries this is unacceptable. There, the term “handicap”, is used only in extreme cases for medical conditions that remain unidentified after exhaustive diagnostic workup. Because of availability of advanced diagnostic facilities and professional expertise, in most sick children, their condition will be assigned a proper diagnosis along with the name of the disease. This is the reason why the term “handicap” is almost never used alone. One would seldom say “this child is handicapped” but rather say “this child is handicapped because of “………..” (the name of the disease). Unfortunately, in Oman the situation is reversed and vast majority of children belong to the group “handicapped for unknown cause”. For obvious reasons such state of affairs is far form optimal and the situation requires urgent and focused attention. How to go about it? There are many ways to tackle the problem and workers at all levels can contribute to the cause, one way or another. The basic tool is to be inquisitive. Everyone looking after handicapped children, should try to understand the problem and use every opportunity to ask “what is wrong with this child”? or “what is the diagnosis”?. This is a very simple weapon but if used consistently it can be productive. Why is the situation in Oman less than optimal There are many reasons for this. First, in Oman the number of handicapped children is high and second, the magnitude of the problem is related to the high incidence of the Genetic Metabolic Disorders (GMD) in this country. In spite of this the degree of awareness about GMD is low and that is probably due to lack of education on the subject. In a country with high incidence of GMD, there should be commensurate education of professionals on the subject. The reason for the described predicament is historical and cultural. Most of the doctors and health administrators in Oman were educated on western standards where GMD are rare. For them GMD is a mysterious, esoteric area of child health care comprising complicated untreatable maladies, difficult to understand and diagnose, with negligible contribution to daily practice. As it turned out, the scenario that emerged during the last 20 years has been radically different from what was anticipated and many were surprised. GMD arrived and did so with vengeance. As compared to the western countries, the incidence in Oman turned out to be very high and consequently the disorders assumed prominence as the major contributor to childhood mortality, morbidity and handicap. This situation constitutes a major challenge and requires adjustments of practices in the domain of childcare. Why is it important to identify the underlying disease? I said it on numerous occasions and I will say it again: When dealing with sick children, regardless of their presentation, one must know quite accurately and specifically what is wrong with the child. The accepted paradigm is that in medicine, accurate diagnosis is the basic pillar upon which all subsequent interventions, treatment or no treatment is based. There is no way around it, regardless of the complexity of the disease or the diagnostic work up. At practical level this concept carries serious ramifications as some of the children with special needs suffer from diseases that happen to be treatable but not identified i.e. remained undiagnosed. Is this common? It varies from region to region and I will dare to predict that in the group of “Children with special needs”, at least half suffer form one of the GMD that is treatable and preventable. What consequence does this have at family level? The family will have only two choices. The first is not appealing because their unfortunate child will be labelled as handicapped, and all he or she receives is supportive services. The point to make is that the child’s condition is not a preordained destiny. His or her future will depend on availability of appropriate medical services that can be offered effectively. The second, more acceptable option would be to find out what is wrong with the child, that is, to establish an accurate diagnosis and on the based of this, decide what treatment to prescribe. On the average, a handicapped child will stand a reasonably good chance (50 per cent or so) that the treatment will be effective. Under fortunate circumstances, he or she may turn out to be a normal child rather than a child with special needs. Indeed, a significant and enormous difference. From / Oman Observer