Hi

Hi, My son has been diagnosed as having thalassemia. Dont know whether its major or intermediate yet. He is five months old now and hasnt needed a transfusion yet though hes been monitored since he was two months old. This is a great informative site and I have alot to go through to findout what to expect for him .  Zahra

Hi Zahra,

Wel-come to the forums dear. You are free to ask your queries. I'm sure you'll get a quick reply to it.

Take Care!!


\peace/

hi Zahra

Welcome to thalpal. Please tell us about your baby's hb thenwe can get some more information. Also did u get his DNA done. Are you and your husband both minor's. Do you have the mutations you both have?? Guess lthiots of questions but these answers will definetely help you more about his condition.

Take care Puja

Welcome Zahra 

Do tell us more about your son's hb levels and can i ask where are you from?

Zaini.

Hi Zahra,

Welcome to our site  .

We are happy to have you here and hope to help you through learning about your son's condition.
My 10 year old son has thalassemia major.

Sharmin 

Dear Sharmin,
Thanks for making me feel welcome. I hope your son is doing well. I have three children and my oldest son is ten years old too. Its the youngest who has thalassemai though. The other two are minor. Zahra

Hi Zahra,

I have two children - my oldest (10 year old) has thal major and my youngest (6 year old does not carry thal at all, go figure  ). 

It is nice to have you here.  I hope your kids are doing well.  Don't worry, there is so much advancement in treatment these days everything will be fine.  Whenever you need help we will guide you here.

Best 

Sharmin

my son is five months old now. His paediatrician was alarmed whne his jaundice ( then thought to be ABO incompatibility ) was still going strong at two months so checked his Hb and had us rushed to the hospital for a transfusion. But the paediatric haemotologist there redid the electrophoresis and concluded that b/c he has no Hb A it is Thalassemia. They didnt do a transfusion as his Hb was 7.4 at the time. They said as long as the baby is active and alert and growing well he doesnt need blood till he is at Hb6.  After that he has been monitored at first weekly, then every two weeks and this is the first time they have called us back after 3 weeks. He hasnt needed a transfusion yet but I have heard usually kids have enough fetal Hb till the age of 6 months  to not need it. The doctor introduced us to two girls and their mothers who were being transfused for Thalassemia major at that time. One girl was three years old and the mom said she is just like any other of her 7 children except she must keep her transfusion appointments. This was the first with Thalassemia and had been taking transfusions since she was three months old. The other was a 15 year old girl who looked very jaundiced and around 11 years old. I think she wasnt growing well but she was going to school normally in grade 10.
My son isnt so jaundiced anymore. i dont know if its b/c of the homeopathic medicine I started or b/c the ABO incompatibility wore off. How much and how often should I expectthe hemolytic jaundice can anyone tellme. The three months he has bveen monitored his Hb remains between 7 and 8 which the doctor called stable and gave as the reason for the increased gap between checkups.

I'm American originally from Pakistan

Hi Zahra,

Just keep monitoring his hb,since he is not six months old,one can not be sure ,he can be a thal major and he can be a thal intermedia,when he is six months old you can repeat hb electrophoresis to get the clear picture,if he is an intermedia,he might not need transfusions if his hb maintains.and you'll be able to try hb F inducers,which can help maintain his hb and avoid transfusions.If his hb keeps hovering between 7-8 he might br an intermedia,to make sure,you can get DNA testing.

Keep sharing.

Zaini.

They did a test called beta thalassemia pcr about one and a half months ago but havent gotthe results yet . Is this the gene test? the doctor said it can identify some mutations.

Yes, PCR (polymerase chain reaction) is for used for DNA Testing.

From:- http://www.horizonpress.com/pcr/

PCR technique is a vital tool in many areas of science. PCR has revolutionised molecular biology

PCR has been extensively modified to perform a wide array of genetic manipulations, diagnostic tests, and for many other uses

As far as i know this is the same test done in CVS,i wonder why haven't they got any results yet?

Zaini.

The delay is b/c they collect a batch of samples and then send it out of the country for testing. I hope its ready by the next vist on October 27.