This is a topic I have been thinking about since little A had his first comprehensive exam and I saw the effect this had on Sharmin. Since then we have seen this issue arise again with Little Miss A and even with Zainab's liver tests. Tests are very necessary but there is a certain degree of anxiety that accompanies this. With Little Miss A, we have seen a situation where alarm was raised and necessarily so, but without some of the assurances that should have accompanied test results. Assurances that for a child her age, that this was indeed correctable and also very importantly, not an immediate danger to her well being. With Zainab, we have witnessed how simple things like time of day affect these tests.
So, what do we do? I think we have learned a great deal this past year and that we need to add to our approach when counseling people about routine testing. Looking back, I would try to emphasize strongly to Sharmin that these tests done in the comprehensive programs are necessary to determine baseline measurements and to also see what adjustments need to be made to the treatment regimen. With Little Miss A, I think we have learned that bone tests in young ones can reveal tendencies but not necessarily tell us the immediate state of bone health in a child. Factors like genetics play a big role in growth and development and a child with a small frame may not test the same as a bigger child of the same age. Other factors like birth weight and premature birth also play roles and they should be taken into account. With Miss A, we have seen that adjustments to diet and supplements, along with regular exercise can get things back on track.
So, what we need to do is take these experiences and use them for the benefit of others with similar apprehension about testing. The value of the tests should be emphasized, but in the context of there may be some adjustments needed after these tests, but that's why these tests are done in the first place. There is no reason to fear results. If adjustments need to be made, so be it, but this should be seen as a positive and not something that strikes fear into the hearts of parents who already have so much uncertainty about the future running through their heads. We need to take this experience and use it to help others prepare emotionally and mentally for these routine tests, without feeling they should fear the results. My point of view about little A's tests was very different but that was easy for me because he is not my child and because I knew that he was already doing the things that were necessary to ensure his good health. Some fine tuning was needed, but that is to be expected and is one of the main reasons these tests are done. It was much easier for me to be somewhat disassociated from the fears because I am not little A's parent. I saw a child who is an athlete and knew this just would not be possible if there were any bone weakness issues. With Little Miss A, I saw a child who really isn't old enough to have developed serious bone problems. If she was untransfused, I would have more concern, but being that she has had regular transfusions, I knew that she may be behind a bit, but this couldn't really be osteo at this young age. Yes, there was reason for concern, but perhaps this could have been presented to the parents in a less alarming manner. I wanted to say more about this case and just flat out say that there isn't much reason for immediate worries and that with some changes, she would be fine, but I am not a doctor and felt this is something that would have to come from the doctor once all test results were available.
We need to make conscious attempts to better prepare parents and patients for annual tests. When there is no reason to be worried, we need to emphasize this. When there is cause for concern, as we often see with adult patients, we do need to raise the alarm. Today, I received the bad news about Olivia and went back and looked at her posts. A year ago, I was not so certain what she should do. Today, I would be adamant about the need for immediate intervention with IV desferal. What we have seen in the past year about intensive chelation and its ability to reverse many problems, has taught us a great deal about the intervention needed in some cases. Let's continue to take the knowledge we acquire to refine our message to prepare people for what to expect from routine examinations and also what should be done when things are at a critical stage. As our group has grown and reached so many more people, we need to look for ways to make things easier for parents and patients to absorb and understand. I hope all who have learned can contribute to making it a little bit easier for the next person to manage what they are going through, so that armed with knowledge, they can deal with things in a context where they have an honest view of what to expect and an understanding that much of what is done in terms of testing and monitoring is done so that a specific treatment program can be designed for that particular patient and that without all these tests, this just isn't possible. Sometimes major issues are found that need to be dealt with, but mostly, these annual exams are done with the purpose of fine tuning and improving a patient's treatment program. Instead of viewing these tests with fear, we should be looking at them as an opportunity to give patients an even better life. Much has gone into developing these treatment programs and we need to recognize that everything done has a purpose and that purpose is to improve the health of each patient. When students are evaluated in school, it tells us which areas need work and these tests used with thals have the same goal. They exist so patients can do even better and should be seen as positive developments in the treatment of thalassemia and not something to be feared.
I have a basic belief about learning. When we learn, we have an obligation to pass this knowledge along so that others can also benefit. We learn more each day and everything we learn should become part of the whole. Use your experience and knowledge to help others. When you look back and see how you felt before you went through something and how differently you feel once it is past, you can come to a better understanding which can then be passed onto others. We can make a big difference to others if we give them the benefit of what we have already experienced. Let's help ease this stress and anxiety that come so easily when facing the unknown.