Test Anxiety

  • 3 Replies
  • 5712 Views
*

Offline Sharmin

  • *****
  • 4155
  • Gender: Female
  • Little A
Test Anxiety
« on: May 16, 2009, 09:02:10 PM »
Hi friends,

I find myself becoming extremely stressed and nervous before my son has any testing done - and while waiting for results.  During our Oakland visit this winter I was extremely extremely nervous, so much so that I became very sick while awaiting results.  During the visit various routine tests were done, and some of them were done for the first time and I was very afraid of what the results would reveal.  It took several weeks for us to receive some of the results and in the mean time I was a wreck  :scared.

Thankfully the results were fine, but the strange feeling persisted for quite some time.  Perhaps the appointment and tests remind us that our child has a chronic condition and these tests are being done because there are serious risk factors.  It is scary having cardiac MRI, bone density, liver iron etc etc done for young children.  It is scary to think that the child is being monitored for some very serious complications.  Having a comprehensive appointment is extremely necessary, yet it is also likely cause a lot of anxiety because a lot of information is delivered all at once.  Sometimes technicians, without meaning to, say things that can cause a lot of worry for parents - and most times these comments are not even applicable to the particular patient.  I know other moms have felt this kind of anxiety as well - I would love to get their feedback and ideas as well.  I know that lil A and Ahmad went thru their testing at the same time - Manal and I both had a tough time. 

What I have learned from my experience is that much of my worry was unnecessary.  The routine tests are unlikely to find anything devastating in a well treated young child, and were anything to have been found - it was likely to have been minor and adjustments would have been suggested.  During our first Oakland visit, lil A's iron was 2880 - but with proper treatment his iron levels were down to 1500 within 6 months - and now 9 months later his ferritin is 1045.  This tells me how important the comprehensive appointment really was.  Although finding out his iron was high last summer was a negative thing, overall the experience has been positive because we have been able to lower it very significantly.

I hope that everyone will find comfort in this.  Tests can cause anxiety but for thalassemia many issues are reversible and if you follow the proper treatment plan you can turn things around completely.  We have experienced significant positive changes in the last 9 months. 

We also received a lot of positive feedback about what is being discussed on this forum, which was great.

Good luck to all during future testing! And remember to have faith and try to stay calm!! 

Sharmin
Sharmin

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Test Anxiety
« Reply #1 on: May 16, 2009, 11:10:10 PM »
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.
Andy

All we are saying is give thals a chance.

*

Offline Zaini

  • *****
  • 3448
  • Gender: Female
  • Life is too short to be perfect.
Re: Test Anxiety
« Reply #2 on: May 17, 2009, 05:45:36 PM »
Sometimes i just marvel at how well you guys can write :) and how you are able to express your emotions in words.

Sharmin,

I can totally understand what you are saying,infact every mother would,but to be honest,you are really lucky that you have the facility of comprehensive thal centrer,i would love to have Zainab checked from any such center,to be sure that she is not developing any complications,this thing worries me more then the tests them selves,that what if she'll develop any problems and i won't know until its too late.Lately when she had high SGPT levels,i was worried sick,because i wasn't even sure about what does it properly mean,we talk about ferritin of below 500 and her hemo says below 1500 is ok,because to them its still unachievable,it get harder and harder to get a prescription from her,you remember last time when we did SGPT in afternoon and it came back 94,she immediately said you might have to stop Asunra and i was really feeling sick coz i didn't want to break this news to Z coz i knew she'd be devastated,she knew i was worried about something.

This group has been a blessing for us all,not only in terms of knowledge but in psychological help too,just yesterday i wrote that  wasn't ready to drink tea,let alone green tea,today i told her that uncle Andy wants you to drink tea,he says it will help decrease your iron,would you do it ? and she says yes i'd give it a try :) thats how this group has become a second family for us  :grouphug

Zaini.
^*^Xaini^*^

*

Offline Sharmin

  • *****
  • 4155
  • Gender: Female
  • Little A
Re: Test Anxiety
« Reply #3 on: May 17, 2009, 08:51:52 PM »
Zaini,

You are so right, I am realizing that we should be greatful to have these facilities available to us.  Remember also that the main thing to take from all of this is the appropriate course of treatment required.  By transfusing and chelating our children appropriately we are avoiding possible side effects.  Also the supplements that we are giving our children prevent many of the possible complications of thalassemia.  Because of this website and the information that we exchange - lil z will be healthier than patients in North America :)  You are doing such an amazing job with her.  As Andy has said, and also what the docs in Oakland say - because of lil Z's athletic abilities (1st place in sports day) etc. we know that she has to be healthy. 

Before the antibody perhaps I would not have been as concerned about lil A's tests - it is this nasty antibody which caused large volumes of frequent blood transfusions which had me really concerned.  In order to deal with it he is having ivig, ritux, more desferal than ever and exjade - perhaps these are the factors that have really upset me in the recent past.  There is a lot of uncertainty because although the problem seems to be under control for the moment I sometimes wonder how long things will need to carry on like this.  Will we have to continue intermittant ritux ivig for a long time?   For now, I can only be glad that we have found a solution that works and he seems to be doing well.  Doctors say that usually over time antibodies like his subside - it can continue for years and then finally go away.  I am hoping that it will go away sooner than later. 

In the meantime, I am grateful that we have this website, Dr. Vichinsky and good friends to get us through all of this.  The testing itself has eventually been a very good thing for us because we have been guided in the right direction. 

Zaini, I hope that the desferal/exjade study is published soon and doctors approve the combination - which for most patients is exjade 7 days a week, desferal 2X a week.  I think that this combinaton would be great lil Z.  I will try to get more information next time that I am in Oakland. 

Good luck to all,

Sharmin
Sharmin

 

SMF spam blocked by CleanTalk