Talking to your child about thalassemia

Parents have many ways of teaching their children about their thalassemia.  Ultimately,  it is the children and not the parents who will be responsible.  How well thal patients do depends initially on how well the family complies to the treatment, but eventually it depends on how well the patient understands and manages the disease.

I am of the view that the earlier we begin talking to children about thalassemia the more prepared they will be to take care of themselves as they mature.  I began talking to my son as soon as he could talk about his thal, as much as I thought that he could understand at each stage.  At the same time, I also pointed out the difficulties other people need to manage in their lives so that he would not feel singled out and develop the "why me?" attitude.  Now that he is 10 years old he knows pretty much everything that I do about the disease. 

My reason for giving him all of this knowledge is that I feared immensely the thought of him turning 12 and suddenly realizing that he had this disease feeling overwhelmed everything associated with it.  He has slowly built up his knowledge of the disease and he has learned to deal with it little by little.  I have told him how the life span was once short with thal major and how and why that has changed.  I have told him that he will read about thals passing away at a young age - and again how and why.  This is to prevent the fear he would feel if her were to read or be told this information suddenly.  I have been as open and honest as I can so that if he ever has a question or a doubt he can ask me and trust that I am giving him the best information.  I also encourage him to talk to his doctor and ask questions so that he realizes that this communication is about him and he should participate - and so he does not feel as though we are talking about him as if her weren't even there. 

Little by little I let him take over more and more of his treatment.  Today he began making a journal of his lab results, hg levels, transfusion intervals and volumes etc. 

This has been my way of teaching him about this aspect of his life, so far things have been going well I hope it proves to be best for him in his future. 

I would love to hear everyone else's ideas on teaching their children about thalassemia.  I have also heard many thal patients speak very highly of their parents and I would love to hear what their parents did that was helpful for them.  If anyone feels that there is something their parents could have done differently that would have been helpful for them - it would be great to hear that to. 

Thank you everyone for sharing!

Sharmin

Thanks so much Sharmin for posting on this very important topic. I really need to learn how to cope with this. I admire your way so much and i find it the best but i don't know how to  practically start.


When my son did once asked why he is taking all these supplements and his sister only takes her multivitamin and sometimes she even doesn't . I answered him that his father, me and him are different than his sister body and we need to have supplements to keep our body healthy.
Actually he accepted my answer and didn't ask more, perhaps knowing that his parents share him made him feel good , actually i don't know

From your point of view, what shall i say more ( he is now 6 years) and shall i wait till he asks me more questions or i just go and tell him???

One more thing is that since we are not transfusing ( meaning that we don't have a certain routine everymonth ) shall i also explain or just the explaination has to be correlated with transfusion.

One last question, have you observed that knowing all the details of the disease has once put limitations to his ability even if he didn't show that or this differes from a personality to another and there is no rule and everychild could have a different response??

Again thanks for raising this issue,it is so important to me
manal

One last question, have you observed that knowing all the details of the disease has once put limitations to his ability even if he didn't show that or this differes from a personality to another and there is no rule and everychild could have a different response??

At least not with my daughter,she does everything a child of her age would do,she has never showed any signs of thin king like she is diseased and she can't do even a single thing,thal never stops her from doing anything,she is always jumping around,unless it's her last week,in which she sometimes feel a bit tired.And i don't think kids take much notice of these things unless they are not well on the permanant basis,or untill they grow up and are able to feel pity for themselves,which again comes to parent's behaviour towards their disorder.

Zaini.

Manal,

I understand your question.  Because thal major children are tranfused and chelated there is a very obvious difference in their lives from other children.  In your case, the differences are more subtle.  I think it is very important to start slowly in any case, but I do feel that it is very very important to equip the children with knowledge.  You can protect them from knowing things now, but eventually they will find out and at that time you won't be able to control what and how they learn.  If we shape what and how they are learning about the disease now, we can make sure that they learn correctly.  People tend to do better with things if they are always there.  Adolescence is a difficult time anyway, and that is when some thal patients suddenly realize that they have this 'disease' - often times I have found that these individuals can really 'mess things up' for themselves during these years.

If you are taught to understand and accept thalassemia before these years than the thalassemia becomes part of the routine - otherwise it can become a nightmare and a struggle. 

One last question, have you observed that knowing all the details of the disease has once put limitations to his ability even if he didn't show that or this differes from a personality to another and there is no rule and everychild could have a different response??

When I explain thalassemia to my son, my main purpose has always been to make him realize that it does not pose any limitations for him - perhaps this is why I like to be the one to begin telling him early on myself about the disease rather than having him learn it some other way such that he would feel that it makes him anything less.  We can give them example of people who have done great things despite having challenges.  I tell him that everyone has challenges that can potentially hold them back - some challenges can be seen and some cannot - but those that overcome their challenges succeed and those that succumb to them don't.  I told him this because I truly believe it.   I have found that so far he has been successful and has never expected less than his personal best from himself, the same as Zaini describes of Zainab. 

Also, we teach our children in our behavior toward them and by the way we live our lives.  Manal, I see you live your life with courage and faith - this will definitely help your son do the same. 

Again, there are so many different ways to do this and it has been great hearing the different views and concerns. 

What do you all think?

Sharmin I applaud you for making up this topic... Its such a good topic...

 

Its so important for any parent to talk to their child about their illness...It makes it less stressful on the child and easier for the parent too, when dealing with questions..

My mum didnt know much english nearly 40yrs ago and it was hard, but she did make me understand what I was doing was for my own benefit and for my well being..

I really like this topic...

Well done 

Smurfette,

Thank you 

Your input here is very valuable - as we all see you having a great attitude toward thalassemia and taking initiative over your own care. 

Indeed, patients know best! 

Sharmin

I agree with Smurfette
This is a wonderful topic to have.
As time passes I'm sure we will all add what our parents did for us but at the moment my mind is blank... sorry. Im due for my blood so Im too tired to think straight. If my husband read this he'll probably say "What's new?" hahahaha

As our youngsters with thal major grow, many questions come to my mind.  While they are young, we are watching their blood test results and ensuring that we take proper precautions with their health.  There will come a time when we may not know the results and we can only hope that they are taking care of their health. 

Right now I am thinking that all I can do is take care of him as best as I can so that I can give him a good beginning and teach him along the way how he can best take care of himself.  I hope that once he is older he will follow this example and continue to take good care of himself.   

All parents wonder about this as their children grow, but as a parent of a thal major I know that in my son's case the affects of non compliance and improper care can be deleterious.  They may not realize it in the beginning, but over time it can be traumatic.  I am seeing that many patients are reluctant to involve their parents when their results are not well - because they do not wish to worry their parents or they find their parents to be over bearing (I think I am the later...)  I can imagine myself standing over him with a spoonful of Osteocare even when he is 30 years old!  I am realizing more and more how important it is for me to ensure that I teach him properly and help him get in touch with people he can seek help from in the event that he does not want to involve me. 

I also know what a burden it can be for spouses if our children don't take initiative for their care.  I think that spouses should be supportive and available if our children wish to talk to them or need to lean on them.  At the same time,  I don't wish to raise a child who does not take responsibility for himself, leaving his spouse to worry and take over the job that I am doing now.  That would not be fair to my son's significant other. 

I know that some of these issues will matter in the near future, as my son becomes a teen - and the other issues will not be a concern until far off in the future.  However, what I do today will influence who he becomes in the future.  I am hoping that I can help him become a person who is responsible for his own health - and that he will be in good physical and emotional health so that he can be healthy, have healthy relationships and in a position to support others. 

I think that we should all equip our children with these contacts and methods to help themselves.  I hope that my son will always keep me involved in his health and consult me, but I don't know if he will - and I do want to give him space to grow and live.  I hope that I gain the wisdom to be a good mother once he is older.

Sharmin

Sharmin,

I think positive attitude is the key,the way you have dealt with thalassemia and the response Little A has shown are very hopeful,i know children go through a lots of changes in teenage,psychologically and emotionally both,but remember children learn from their elders,and you have shown nothing but positive attitude.I don't consider myself a very good mom,not a very stable one atleast  but even i have never given my daughter the impression that their is any negativity attached with her thalassemia,i always tell her that maintaining your disorder is like maintaining your bedroom ( sorry for the poor example) i tell her that if you'll keep stuffing things in your bedroom,it will be crammed and you won't be able to walk in there ,in the same way you keep getting blood but don't chelate your cells wont find a way to move and carry oxygen through your body.
All we can do is tell them what ever is better for them,with or with out thalassemia,in any aspect of life,when they grow up,obviously we won't be able to follow them every where,but our prayers will be following them for ever .

Zaini.

The thought of not being in control haven't crossed my mind before though it makes a lot of sense that the more they grow,the morewewill not be involved. I pray that they would find a cure before being in such position

manal

To both Sharmin and Zaini
I agree with you both.
Zaini I love your way of explaining to your child.
You both have a wonderful way of teaching your child how to cope with Thalassaemia.
Not only are you supporting your children but you are also teaching your children how to be self sufficient. That is a wonderful achievement to have.
There are so many reasons why some don't maintain chelation and although we may not like that or  know the consequences, all we can do is support, show and encourage so that hopefully no one stops chelation.
To Manal
The thought of not being in control has crossed my mind and I hated that feeling.
The only way I could get over that was by taking more control of my management such as having more input with everything including accessing my own portacath.
You are all wonderful people and parents and I can't help but feel proud to be a part of you all.

Thanks for your encouregment and support . Hope your work and lovely students are doing well

manal

Cherieann,

Thank you kindly for your comments.  We hope that we are able to instill the values that you have into our children.  I think that with the support we have on this site it will be much easier than it would have been otherwise.

Sharmin

Thanks for the compliment Cherianne,  people like you are an inspiration for us,i wish my daughter will have the fighting spirit like yours when she grows up .

Zaini.

Thank you Manal, Zaini and Sharmin
I believe we are all lucky to have one another when the road gets a bit bumpy.
Tomorrow I will be meeting with my haematologist as I have a few concerns but no doctors can answer me.
I'm either too hard or they have no idea so I've made an appointment to see the boss.
I had a nerve physiology in the holidays and it was discovered that I have slight nerve damage in my legs.
It took them 8months listening to me complaining of tingling and loss of sensation before the put in a referral and that was only because I went to one of the top haematologist. Now I'm going straight to the big boss. They say its because of my diabetes. I'm not sure as my ferritin is quite high in the 4000 and my haemaglobin dropped to 84.
I think its because of the ferritin as my diabetes has been quite good. I'm still waiting for my new pump as the old is getting obsolete. Hopefully this year will see more inprovement for me. At least I have my classroom of students to keep me going.
Much love to you all
Cherie