As parents of thal patients - we all receive information with regard to our children's physical health. Hopefully, we are able to transfuse and chelate our children as needed.
Along with their physical needs, our children also need to develop healthy emotional and mental health. They need love, attention, discipline, involvement in team activities etc etc. Ultimately, the emotional health of a thal patient will effect his/her physical health because emotionally balanced thal patients are more likely to comply with their treatment. If children love themselves and their lives they are more likely to do what it takes to live long and healthy lives.
It would be nice to discuss ideas that we have learned that each of us can incorporate into what we are all doing already. I know the mom's here are exceptional and I would love to hear what you all have to say.
Over the years, from my visits with different clinics and my own observations I have picked up a few ideas.
Eventually, they will be taking over their own health - and at that time they need to 1) want to take care of themselves, 2)be disciplined enough to do so.
I have learned that children are more likely to be happier if they do not spend time feeling sorry for themselves, and if they focus on the positives in their own lives. A good self esteem is also important. This can be developed through team activities, charity work, helping others and feeling important, getting an extra edge with school work, being involved in art or music activities. A child who is competent and has an opportunity to develop some talents is more likely to have greater self esteem. A child with a full life and many interests and capabilities will more likely be physically and emotionally healthy.
Having faith in our children also gives them self esteem. Whether they are getting an IV or a poke for desferal, believing that they 'can do it' will help you and them. Don't make a big fuss around their pokes and eventually they won't either.
Although thals may be prone to depression - I think that we can do a lot to prevent it. We can do so by making their transfusions more fun, and getting pokes over with rather than allowing "five more minutes, five more minutes..." We can do so by acknowledging their feelings. If they say I am sad - you find out why and if they don't know why - help them accept sadness as one of their feelings just like anger and happiness. Tell them that their feelings are what make them human.
These are a few of my ideas - I am eager to hear yours!