my new baby just diagnosed with thal major pls help

 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?

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

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. 
 

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

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

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 

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

Best of luck,

Sharmin

Hi Avasmom ,
  to the Family ... keep posting

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 

Hello Avasmom! 

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,


Laura.

Welcome to the forum.

Most parents worst thought is the iron chelation part rather than the blood transfusion. We were certainly very disturbed when we start reading about desferal and 10-12 hours of needle everyday for the rest of their lives. Our daughter is five now and doing just fine. She takes 375mg of exjade every morning for chelation. We gave her desferal for 40 months before switching to exjade. Exjade is available for patients since last year and is a great convenience, please note desferal is around for almost 40 years and has a proven record of success with thal patients. As a matter of fact, desferal has contributed greatly to the longevity of thal patients.

The truth is that desferal is not scary at all, there is some adjustment time but people do adjust pretty quick and some of our members are doing the pump chelation for 30 years and more. Besides, now oral chelation drugs such as Exjade and L1 are available, which are consumed once a day and that's it.

Chances are that your daughter don't have to go through the desferal pump chelation at all. Please note chelation usually starts after 10 transfusions, exjade oral chelator can be started as young as two years.

Second biggest fear is the mortality of thal patients, which now a days with medical advancement and the management criteria has improved to beyond 40. Infact, patients born today should enjoy good quality of life and not worry about the mortality.

The key to manage thalassemia (in my experience) is knowledge, get as much knowledge as you can and ask plenty of questions and you will see that the fear is gone. Some people still live in the past and may tell you a different story, don't listen to them, those days are over.

Please keep visiting the forum and ask questions.

I am so glad that there is more information available these days, even ten years ago when my son was diagnosed adequate information was scarce.  The prognosis presented on the internet was so gloomy...I would spend hours reading on the internet    afraid of what I might find on the next page and then feeling depressed about the outdated information that I had read 

Thank god those days are over, I hope that all parents of newly diagnosed thal children will receive updated information so that they have the courage and strength to take care of their families. 

Sharmin

Sharmin, unfortunatly there are still some medical sites that still write all these outdated infromation about  thal. I don't know what to say, is this ignorance or indifference or what. Last week i read of of those sites and don't know howcome they are supposed to be ''medical'' that had very negative information to the extent that there was a phrase that said '' it is almost impossible to comply to chelation'' and imagine this site was last updated in July 2007 and written by a doctor.

What annoys me is that almost most of the parents search the internet to know about the disorder once their children are diagnoised because of lack of information and it breaks my heart if they are faced by such irresponsible and ignorant sites as the one i am talking about


Avasmom,  thalassemia is difficult but with knowledge and determination it can be safely managed until one day will come the cure and i believe it will be soon.So have faith

manal

Avasmom,

Your daughter is so precious

Sharmin