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For Initial Feedback Remarks on this Research Project Click HereThe purpose is to give a global feed back to all, not just the parents who contribute, by way of an article. This article would allow Dr Billy to comment on how many families are getting a service and who are not, based on what is ideal.
The reason for wanting to do this is because so many, many parents are asking such basic questions on adders.org forum has lead us to believe they are getting very little more than prescriptions for their children and no insight or monitoring.
This must result in, too often inadequate dosages and poor response and results.
The children are on the receiving end of expertise or lack of expertise. Our real concern is obviously for these children at the bottom of the feeding chain who are being expelled or blamed and punished for an inherited condition that responds so well to correct treatment.
This approach might bear more fruit than a direct approach. How will the parents get to know how little they are receiving without insight? Attacking their doctors can only make enemies!
Not an easy project to embark on but we feel essential.
It is appreciated that there are professionals out there who are giving a great service but for those families who are not receiving this it makes a difficult situation even more difficult.
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