Discussion Forums > Thalassemia Major

Checklist for thal majors?

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BabyI:
Hello everyone,

As I mentioned before my almost 2 month baby is thal major. I am going over this forum to understand what steps I should take during my baby's treatment.

From the forum I learned, so far, that I should get the following done:

1- contact Colleys Anemia Foundation (I've done so)
2- contact one of the excellence centers (will do so)
3- get phenotyping and genotyping done before transfusion (will ask doctor)

Other than the above, what else should I get done?

Thank you

Bostonian_04:
Congratulations on the new arrival. I think you are on the right path...Get your child's hemoglobin checked every month to decide when is the right time to start transfusion. sometimes, it is as early as 3 months (for us that was the case) or it could start when the child is 1 year old...watch out for signs, if you are not doing the Hgb check - low appetite, crankyness, lethargy etc...but don' get too caught up in these..

Enjoy having your child and count all the blessings...when our daughter was born we were an emotional wreck when we learned of the condition and almost forgot to smile and enjoy having her till we met Thalpal and Andy on this site. so. do not do that.

Sharmin:
You are doing all of the right things.  That is all you need to do right now in terms of managing thalassemia - as Bostonian has said now you can focus on enjoying your bundle of joy.   Once your child is ready to be transfused she will be on a transfusion schedule, between transfusions you will likely forget that she has thalassemia at all.  A well transfused child is a healthy child and should not display any signs of being unwell.  And that should be our job too, believing that our kids are healthy and treating them as healthy, normal children. 

Management has become much easier in the 14 years that we have known about our son's thalassemia and it will get easier yet in the future.  Our children are intelligent, athletic, creative and happy - yours will be too :). Please feel free to pm me anytime - I will give you my contact information in case you need someone to talk to. 

All the best to your family and congratulations on the new bundle of joy:):)

Sharmin

BabyI:
Thanks for the replies and reminding me to enjoy my baby. Once I found out about this illness, I was so confused and lost. I searched online, only to come from it crying and in desperate hope. I thought I would be losing my daughter. It wasn't until I discovered this forum and read the posts, that I realized there is hope in fighting this thing and that my child can live a normal life. I feel like I know you both because I have read your stories. I am now considering this as a common illness that can be managed rather than a chronic illness that is a death sentence. I see my baby and don't even think she has any illness. Maybe that's because she hasn't started transfusions, but still, I feel she will be as healthy as anyone and there is no reason to feel bad for her. She means the world to us and we will help her any way possible.

I also put things in perspective after reading about and talking to others about their struggles many years ago. I cant imagine what they went through. I feel I am blessed to have support, help and hopefully a cure on the way. I will remain positive even when it may be hard. I think the only time it will be hard is when the transfusions begin and worrying if she gets anything bad from the blood. But Im sure you all are going through that. Hopefully one day the cure will be available. InshaAllah it will be.

Thanks
BabyI's mom

Andy Battaglia:
The one test I would recommend be done right before the first transfusion is a hemoglobin electrophoresis test, so that you have a baseline to go by for possible future considerations, such as use of hemoglobin inducing drugs.

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