Changing management of thalassemia with age

As my son grows I am becoming aware of how his needs are changing.  I now need to manage his thalassemia very differently from how handled it even 6 months ago. 

He requires independence, autonomy and involvement in his life and treatment.  He needs to make more choices and have many more freedoms.  Simply making decisions for him and handing him pills is no longer a good thing because although he may comply - resentment begins to breed because he feels like he does not have choices. 

I have learned that he needs to know exactly why he takes each and every supplement, he needs to have a lot of time to play and be a child and he needs to have very few restrictions regarding what he is allowed to do.  Regardless of how worried or reluctant I am - I have to hide it and show courage and confidence in him.  I need to let him go and take risks because that is how he will learn to love his life.  If he does not love his life then everything that I am doing is futile because he will not have the incredible desire to live that thalassemia patients need to have in order to survive - and moreso to live a healthy life.

I will try over the next few weeks to describe some of the adjustments that one should make as their child approaches this age - because children can change almost over night at this age and it can catch parents by surprise. 

Sharmin

Hi Sharmin,

When I was posting my most recent post about the transition to adulthood for thals at http://www.thalassemiapatientsandfriends.com/index.php?topic=3097.msg33790#msg33790 I kept thinking about the transition to the teen years, which is in itself, potentially a very difficult time, as peer pressure and normal teenage rebellious attitudes surface. This can be a difficult time for any teen and thalassemia brings a whole other set of circumstances with it for parents who are trying to raise a teen who is also a patient who must comply with a treatment program. The teen and early 20's years are often the most dangerous times for thals, as compliance is often pushed aside in favor of being a teen. Oral chelators have been a huge help in this regard, as they can greatly increase chelation compliance, but even with oral drugs, many patients will still slack.

I think it is extremely important for parents to grasp the concept that they must prepare their children for adulthood just as they prepare all other children. Being overprotective and sheltering will do a long term disservice to the child. The most important thing to remember is that eventually, your children will need to be independent people who can manage their own lives. A good managed care program can be your ally, as the treatment center takes on some of the parental roles and helps young adults comply with their treatment.

From the talk we heard in NYC by the two thal patients, we have learned that it is becoming quite important that these centers also evolve with the new reality of long lifespans for patients. Hopefully, in the coming years we will hear much less about the phenomenon of adult patients being treated in an adolescent setting.

I have heard similar words from parents of teens. Andy is right - Teen age is when the children start skipping chelation - which all doctors agree - CHELATION IS A MUST AND NEVER EVER SLACK IN IT

At the Boston TAG conference in 2006, I met a mother of a young girl from Florida and she was complianing that her daughter has stopped listening and what can be done about it. Also, I met parents of another thal who did not comply with desferal in his teen age and had cardiac issues, but now on kelfer and desferal and doing good.

Sharmin brings up a very very important point and parents need to stay getting ideas of how best to handle it.

Narendra,
i agree to you , Chelation n managing Hg within good levels are the basic-&-key factors in thal treatment ....

Umair

Before I was diagnosed with thalassemia at 15, I spent my whole life sick.  It was so hard because the symptoms and the fact no one could figure out what was wrong with me made many people treat me like a hypochondriac.  Once, when I was in the hospital for an extended time I was expelled from school for being absent!  I fought the medications I was constantly given.  I did all kinds of things to sneak the pills wherever I could except my mouth.  It has been almost 35 years since diagnosis.  I think the one thing that always sticks with me, and I would wish that your son could feel in his heart, how blessed we are to have a diagnosis!  Knowing how to take care of ourselves is the blessing to begin with.  I know thalassemia is a pain in the rear for teens, I remember.  But, far worse, not knowing. 
The best to you both and your family in living a beautiful life, OldThalGal