Discussion Forums > Thalassemia Major

my new baby just diagnosed with thal major pls help

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Sharmin:
Avasmom,

You are welcome to read these posts from my 10 year old son.  The antibody he is speaking of may have been avoided if we
had done the genotype testing that I recommended for your child.  Otherwise (thank god) - he has done very well.  His words will tell you what it is like having thalassemia better than mine will  :wink

http://www.thalassemiapatientsandfriends.com/index.php?topic=1814.0

Best of luck,

Sharmin

maryo0m:
Hello Avasmom :hugfriend,

First of all welcome to the group  :flowers, we are glad you found this forum... as for your cute daughter , I say dont worry about blood transfusions now I am a thalassemia major too and I recived my first BT when I was 4 years old but they knew I had Thalassemia major when I was unborn. And about the folic acid and zinc , these are to help us maintain healthy, no you dont have to strap your daughter down while she's asleep haha  :laughno worries dear really I know it's hard and you are new to this but trust me she'll be fine  :consolethe needle will stay in place once you've inserted it correctly and taped it.

about the port <<< It's un necessery in my point of view because it's for thalassemia cases with really high  iron overload so dont even put it in your mind for now, the only thing you can do is what my mother did for me,

dont treat her any diffrent from the other kids, I became who I am because I had a great mother :heartpink who took care of me and now I know how to take care of my self ....


best wishes and hoping for a great future to baby Ava,

Mariam

nice friend:
Hi Avasmom ,
 :welcome to the Family ... keep posting :thumbsup

aysam:
your daughter is so cute you know what we need to be asking and doing peolpe around the world
 is preventing any more children getting thala it is after all preventable
 if we all get tested both husband and wife knwing we are both minors we should not even risk haveing a baby this
is my view in lebanon they test and if both have minor they dont get married we should have more awarnce to many peope have
thalass minor and dont even know it
 my kids grandmother is 72 years she was tested and she found out she had minor one year ago so
 all theses years  she didnt even know
 what thal ment 
 AWARANCE TOWARDS MARRIGE BOTH MINORS SHOULD BE a big NO
its isnt your fault sweety this has happend did you knwo you had minor ?
your dughter  too cute all you can do is look after and manage her as best as you can and when you feel you are going insain this is the place to be chat and talk to people
 this is what i do becuse you are not alone  :hugfriend

Laura:
Hello Avasmom!  :hugfriend

I am a Spanish patient of Thalassemia Major and I just want to tell you a little bit about my case. I am 26 years old. I was detected Thalassemia when I was 11 months old and I started Iron Chelation when I was 3 years.
My family refused the port when I was a child and I did it again when I was 18. I've been 25 years having the transfusions by the same 2 veins and I still have no problems with my veins. At the beginning, as you can imagine, you cry and you don't understand the situation but you soon get used to it.
About the iron chelation, don't worry. If it is similar to my case, your baby will probably start with oral chelation and, if she has to start sooner, you can be sure that it will only be a pair of years if not less.
What it is for sure very very important is to follow each of the steps that your doctor mark for your baby. I know that it is very difficult to stand the fact of hearing your baby crying but you must try to stay calm because if you can do it, you will transmit this calm to her.

I hope I have help you at least a little bit.

Best regards,

:bighug
Laura.

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