What we have done right and what we could have done better

Over the years, we have found that overall lil A has done very well because of help we have received from this group and because of some wonderful medical intervention that we have had.  We also wish that we had done somethings differently.  I hope that these points will help other parents when they make decisions for their children. 

What we seemed to have done right - because it seems to have benefitted him:
(much of this thanks to this site and superb doctors)

1) began chelation early
2) we have tried to have a relaxed attitude toward thalassemia treatments and encouraged the same from him
3) we offer him a very healthy diet - with many fresh fruits and vegetables
4) we give him various vitamins and supplements that protect him from the oxidative stress of free iron and allow him to grow healthy and strong. 
5) we have encouraged and enabled physical activity and sports the benefits of which are a healthy body, healthy habits, strong bones and confidence
6) we have kept him apprised of his condition and what is essential to keep him healthy - we tell him why we are giving him certain supplements and treatments and why he should maintain these practices
7) we try to empower him to make decisions for his health when possible
8) we try not to allow thalassemia to limit him with regard to activities that other children his age are able to participate in
9) we try to teach him to deal with disappointment because it is a part of life
10) we try to live healthy lives ourselves because we are his role models
11) he has been transfused on time which has protected his bones and spleen
12) IP6 has been excellent for him

What we could have done better:

1) genotype testing and extensive phenotype testing before his first transfusion
2) I wish we had the option of starting him on exjade rather than desferal - because exjade does not interfere with growth as much as desferal - and it is also less traumatic
3) we would have let him get more colds and flus by spending time with other babies his age as a child - this helps the immune system develop better (perhaps he would have been less prone to autoimmune hemolytic anemia and allergies)
4) while he was very young, in efforts to avoid high iron foods we also avoided certain fruits and vegetables - we now know that this iron is non heme iron - and the benefits of having them in his diet far outweighs that small amount of iron he would absorb from the anyway.
5) I would have started on many vitamins and supplements earlier - he had very low vitamin D a year ago
6) I would have made an appointment with Dr. Vichinsky a lot sooner (thanks Andy for encouraging us to finally do so)
7) I would have started his ice hockey a couple of years earlier
8) I wish that I would have been part of this group right from the beginning
9) Personal anxiety - I think that I have had far too many panic attacks and stress - I wish I had found proper information and that I could have been more relaxed.

There are many more and I will update later - I hope that this is helpful to all of our members.  Other parents and patients must have many more ideas and I think that it will be helpful to new parents and new members on our site - please add to this list.

Sharmin

Sharmin,
You Raised good points .. you're always doing this very well ... Keep it Up Sis ...

Best Regards For you n Little-A
Umair

Sharmin, thank you. That was lovely

What is right:
1- Dealing with thal as a life style and not as a disease. Having different needs does not mean i am diseased in the sense that i am incapable. It all starts in your mind.

2- Talking about what annoys the child and reaching an agreement has a magic effect. Sharmin once advised me on how to deal with needle pokes and the usage of dolls or favorite characters for children and how showing them how important this was to them made them so co-operative rather than feeling scared or symapthy for themselves. My son no more cries when he gets poked.

Things i should learn to stop:

Having my son as a non-transfused thal puts a lot of stress on me that is negatively affecting my whole life and my stress is becoming part of my life. I can not stop looking at all his bones  million times day and night and sometimes when he is sleeping. I have been doing this for the past three years everyday,and comparing both his hands, legs, head,.... i am getting crazy.


To be continued

manal

Things i should learn to stop:

Having my son as a non-transfused thal puts a lot of stress on me that is negatively affecting my whole life and my stress is becoming part of my life. I can not stop looking at all his bones  million times day and night and sometimes when he is sleeping. I have been doing this for the past three years everyday,and comparing both his hands, legs, head,.... i am getting crazy.

Manal, I understand this craziness and fear - and as Andy mentioned in his post above - I can see as an outsider that everything with Ahmad is fine.  However, you being his mother and primary caretaker/decision maker probably question things a lot more.  Over the years I have felt the same way and obsessed over things too. 

I went nuts when I was waiting for lil A's test results - as you, Andy and Zaini know very well because I probably drove all of you nuts too while I was waiting.  Andy reassured me many times that logically it did not make sense for the test results to be terrible - but I couldn't understand at the time.  Now I can understand what Andy was saying and I can also see how it applies to you. 

What Dr. Vichinsky had me do was take pictures of lil A over time (since he was a baby) some side profiles and some straight on.   This is how they look for changes.  Personally, I see absolutely no signs of bone deformity in Ahmad - but to alleviate your concern perhaps you can get in touch with Dr. Vichinsky and have him review such pictures of Ahmad over time so that you can have reassurance.  I believe that an x ray can also be done to see if there is any marrow expansion.  I hope that all these steps can give you some peace of mind. 

During the months of March and April I went through significant anxiety and my health was beginning to suffer.  I realized that I was no help to my children when I felt that way.  I hope that we can all learn to overcome these anxieties. 

Please know that it blows me away how much knowledge you have accumulated for Ahmad and how well you are taking care of him.  He is doing very well, god bless him  

luv 
Sharmin