Telling kids?

What do you tell kids about their condition when they ask, and why they need transfusions?

Camilla

Camilla,
I am assuming you have a child or children with thalassemia or something like it.  I was not diagnosed until 14, but, was ill my whole life prior to diagnosis.  I don't know if my parents had a conscious game plan of communication with me, but, I am now 49, and this is something I have really thought about.  I have always appreciated it that my parents were open and honest with me, and I didn't have to worry about what was going on when I didn't know.  I knew.  If you are worried about telling your child, remember, you don't have to tell them all of what a dr thinks.  Just be honest about reality.  I remember my doctor looking at me, as a 14 year old, telling me he believed I only had a year to live.  Such negative opinions a child can do without.  Along with the level of honesty you provide, remember that dishonesty can be worse.  Don't hide things the child should know.  The when, where and how stuff.  Appointment dates and what is going to happen.  Don't wait until the last minute then suprise them with a new procedure.  Prepare, plan, educate ahead of time.  Make your child feel an active part in their treatment, just like anything else they do in life that is good.  Clubs, events, if it goes on the calander, don't hide it
I wish you the very best with this delicate issue.  Hopefully your child will feel empowered by your interest in doing things right.
Take care, OldThalGal

Dear Camilla,

It is a great idea to begin telling children a little bit at a time - what they are prepared and able to understand at their age.  But always remember to point out that other people have illnesses and issues as well - and that thalassemia is their particular issue to manage.  Reassure them that thalassemia should not interfere with their life's goals and quality of life. 

Teaching them early helps them realize the importance of compliance with proper treatment of thalassemia. 

Best of luck,

Sharmin

Dear Camilla,

Actually we have discussed your concern before in another post. We had different opinions and it will be great if you can read it. The link is below

http://www.thalassemiapatientsandfriends.com/index.php?topic=1462.0

Hope you find it interesting

Manal

Dear Camilla,

With kids having short attention spans, it's hard sometimes to get such points as why they need to take their chelators and why they need to be transfused.  So I would say, start small and try to sum it up in as less words as possible but with words they can understand.  For example, we told our daughter who's 7 that her blood is shaped funny.  That they are not circles but curvy.  She needs to go to the doctors to get oxygen for the inside of her body.  So she sees the blood as something good.  And the big one in our house, is why she needs to drink medicine everyday.  And we still have to remind her often as to why.  We tell her the medicine helps to tell her body to let go of the extra iron her body gets.  And that if her medicine is not taken everyday bad things can happen to her liver, heart and kidneys.  Which are very important parts of her body.  And work from there.

I hope this helps you out some.
Best Wishes,
Denise

Hi Denise
Thats a nice way of telling things. Funny is one word my son probably uses a 100 times a day. I suppose he would relate to it if I told him his blood was funny. He is 4 years old and has already started to question. I told him it was to make him strong, but he replied he was already very strong and threw a few kicks and jumps to show it. I knew he was not satisfied with the answer but I didn`t know what to say. The next time his curiosity awakens I will try to tell him your way.

thankyou
maha