Discussion Forums > Thalassemia Major

my new baby just diagnosed with thal major pls help

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avasmom:
 hi all , i am a 22 year old new mom from chicago il.... i think it is great that there are forums out there with great people who take the time to help others in the understanding of things like this!
     


         my daughter who is 2 months old today, was diagnosed last week with beta thal major. she has not yet recieved any treatment because she is ok with just her fetal hemoglobin for now. the doc said she will probably start recieving blood transfusions within the next 2 months.i have so many questions....with the chelation therapy; is it a painful procedure?will i have to like strap her down so she dont accidently pull the needle out while shes sleeping?and can u just take the tablets and not do the injections? what is all this i here about wheat grass, folic acid, zinc, what are all the vitamins that she will b taking? do any of u guys have ports?like for transfusions? if so are they painful? are they visable?can u swim? is it like a hole in the body?where is the port? do u have to get a port? what other medications do u have to be on?

Narendra:
Welcome to the forum avasmom,

First of all, take a deep breath. I know it is a very difficult situation to be in, but things aren't as bad as it sounds. Today, the world has changed, so many medical advances have been made. The chelation therapy has changed. The chances of cure have increased. There are kids who might not even have to take desferal for chelation (Thanks to tablet forms of chelation like Exjade and Kelfer). The port is not something everyone would need, so relax and enjoy her right now. There are fetal HB inducer medicines in the market and some might help, so even though it is very difficult to relax, have faith and know that we are in a new generation of medical treatments

Sharmin:
Dear Avasmom,

Welcome to the site.  As Narendra has said there are many advances in thalassemia treatment.  My 10 year old son has thalassemia major and the treatment is much different for him than what was available for patients just ten years earlier.  What is available for your daughter is even better than how my son has been treated. 

We elected not to have a port and my son does very well without one.  During the first two years my son cried while getting his IV for transfusion, since then he is very fine with it.  It is so much better than going under general anesthesia to have your body altered - and there are risks associated with having a port such as infections and clots.  Personally, I find that thalassemia does not have to physically alter your child so we don't want to do something that will necessarily do that.  I trust that my child can learn to take a little poke once a month in order for him to be a very normal child every other day.

Chelation can take many forms.  My son has been getting desferal, using needles and infusion pump since the age of 18 months.  The first few months were very difficult, but now it is just routine.  Again, over time he is slowly switching to oral chelation so his desferal is being decreased.  As Narendra has said, your child may never require needles or pumps for chelation - you and your doctor can decide that when the time comes. 

There are many discussions regarding vitamins and supplements that your child can take as she grows, we can help you learn about them as you go along.  My son looks and acts like any other ten year old, he goes to school and plays various sports including ice hockey.  Other parents can describe their children, and share the similar stories.  If I knew then what I know now I definitely would not have worried so much. 

Most importantly, your compliance with the treatment, transfusions and chelation will determine your child's physical well being.  Your nurturing your child's understanding of the disease and teaching her that it never has to hold her back will determine her emotional well being.   As Narendra has said, there are many medical advancements possible in the near future that will at the very least make management of the disease less tedious and potentially cure thalassemia all together. 

In the meantime do enjoy your little one, there is every reason to believe that she will live a long and healthy life.  If you have any other questions or concerns we are here to help you. 
 :welcome

Sharmin

Sharmin:
Avasmom,

PLEASE NOTE - have genotype and phenotype testing of your child before any tranfusions are done!!  Skipping this step may lead to potential antibodies against blood and possible complications in the future.  Doing these tests will protect your child.  Please insist on having them done immediately. 

All the best,

Sharmin

Andy Battaglia:
That is excellent advice. If genotyping starts with the first transfusion, some of the biggest transfusion related problems will be avoided. The Exjade oral chelator is approved for ages 2 and up so hopefully you will never be faced with chelation by needle. Since you are in the Chicago area, you are near one of the Comprehensive Care centers, so your child can get the best care available. If you have not yet consulted with them, please do so before any treatment, including transfusions, are begun.

Alexis Thompson, MD
http://www.childrensmemorial.org/findadoc/doctor.asp?dID=1009
Sees patients at
    Children's Memorial Hospital
    2300 Children's Plaza (Lincoln and Fullerton)
    Chicago, IL 60614
    1.800.KIDS.DOC

Director: Alexis Thompson, MD
Contact: Janice Beatty, (773) 880-4618

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