Dear MomofABabyThalMajor

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Offline Sharmin

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Dear MomofABabyThalMajor
« on: December 06, 2008, 10:54:07 PM »
MomofABabyThalMajor,

Welcome to our site.  We all understand the initial shock and disappointment you must be feeling at this time.  It is very difficult when you first receive the diagnosis of thalassemia major and there are many new things which you must learn.  We are optimistic that babies born now will have a bright and happy future if they receive good care.  In fact, with proper treatment they can expect to have near normal lives with a few inconveniences - transfusions and chelation. 

Please see also the following posts: 

http://www.thalassemiapatientsandfriends.com/index.php?topic=2230.0

http://www.thalassemiapatientsandfriends.com/index.php?topic=2256.0

My 10 year old son has thalassemia major and he has written a few posts in the following thread - I hope it helps you to see what it is like having thalassemia from his perspective. 

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

If you let us know where you are located perhaps we can guide you in seeking the best care for your child at a good comprehensive thalassemia center.  Also, please be sure to request genotype testing before your child receives any blood transfusions - or as soon as possible.   

There are many advancements in the treatment of thalassemia and potentially a cure in the near future.  Have faith in yourself and your child - you will do great.  We are here to support you if you need any advice or support.

Best Wishes,

Sharmin
Sharmin

Re: Dear MomofABabyThalMajor
« Reply #1 on: December 08, 2008, 12:42:45 AM »
Thanks Sharmin...My baby boy is 2 1/2 months old. When he was 1 month we came to know that he is Thal - major, we are devasted and do not know what will happen. I have gone into a depression state and do not know how to help my baby....I have a 6 yr. daughter, she is fine..I have a E trait and my husband is a thal minor.(which we have learnt now),  my baby boy has got both of it ...he has no A in his blood...we took him to the Children's medical in Dallas where the heam. (Dr Quinn) said he will need blood transfusion may be in 2 months as is haemoglobin is droping...it was 9.9 last month now it is 8.9, i am so sad do not know what to do...we are trying HLA matching with my daugter but as there is only 25% chance....i do not have much hope...do not know what should we do...will my lillte baby be like other normal kids....what is a port? what are the things that I need to keep in mind for the tranfusion? at what level of haemoglobin will the doctor start it with babies? If there is a match which are the good places in US where the bone marrow done? is the oral chelation effective? Can we try any oral medication for increasing haemoglobin F before starting the blood tranfusion? Pls. help me...

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Offline Sharmin

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Re: Dear MomofABabyThalMajor
« Reply #2 on: December 08, 2008, 03:49:40 AM »
MomofBabyThalMajor,

Yes, I believe that your baby will be very normal and able to do anything that other children can do.  Regular transfusions and chelation will keep your child healthy and indistinguishable from other children his age.  In fact, most parents say that they tend to forget that their child has thalassemia other than when the have to go to the hospital for transfusions. 

The depression that you are feeling is normal, it is part of the normal cycle of learning about your child's thalassemia and the changes that you will need to adapt.  My son is 10 years old - and like other thalassemia children his age he looks and acts just like other children his age.  He does well at school, plays several sports (ice hockey, basketball, soccer) and is a happy child.  If children are adequately transfused they will not sustain any changes in their bones or facial structures.  Proper chelation will protect them from damage due to iron overload and also allow them to grow and develop normally. 

Personally, I don't believe in ports - I would not allow anyone to put a port in my child, I would rather have him get a poke when he goes to the hospital once a month rather than altering his body with surgery.  Also, ports put patients at risk for infection and strokes.  But it is a decision you must make with your doctor. 

Fetal inducers are an option - hydoxyurea and butyrate are some possibilities and several others are being investigated.  It depends on how low your child's hemoglobin drops, also these inducers work better for some patients than others but it is impossible to predict who they will be effective for. 

Bone marrow transplant is an option as well, and the best outcomes are with very young patients.  However, one must be ready for the risks and possible complications of BMT.  There is a risk of death or developing graft versus host disease which is far worse then thalassemia.  BMT is also a long and arduous procedure and there are no guarantees of survival or remission.  Over time safer and less toxic methods of BMT are becoming available, and these options should be considered.  Dr. Krishnamurti has produced a less toxic method of BMT that may be an option for your baby. 

There are also other possibilities that may be available in the near future such as gene therapy - we are all hoping that gene therapy will be successful in the near future and be available for our children.  Gene therapy consists of removing some of the patients own bone marrow, infecting it with an inert retrovirus to introduce the missing beta gene into the patients marrow, these cells containing the proper beta gene is then transplanted back into the patient.  Hopefully this therapy will be successful in curing thalassemia over the next few years.

In the mean time, rest assured that your child has a chance at a very normal life.  My son received his first transfusion at 3 months of age - and he has learned to do very well with his treatment.   As your child grows we can help you with supplements that are vital to his well being. 

Once again, be sure to have genotype testing done to ensure that this information is available when his blood is crossmatched before a transfusion.  I hope that you have had a chance to look over the threads that I have mentioned in my above post - you can click on the threads to read over them - I think that you will find some very useful information. 

Best of luck and congratulations on your new son - god bless him, and may he have a long and healthy life,

Sharmin
« Last Edit: December 08, 2008, 03:56:12 PM by sharmin »
Sharmin

Re: Dear MomofABabyThalMajor
« Reply #3 on: December 08, 2008, 06:33:32 PM »
Dear MomofBabyThalMajor,

I can understand what you are in, I have gone  through the same situation, 6 months back. This march I had my first baby, she has EBeta thal with no HbA. I too was so depressed for a long time, and had practically stopped living life. But one learns to come out of it and  work hard to fix the problem as much as possible.

For my baby too docs told the same thing at 2-3 months time frame. But luckily after that time her hb is falling, but at a much slower rate. At 9 months her hb is 8-9 range, if it falls below 7 they will transfuse her.
She is very active and naughty and crawling around.Only her weight gain is slow and she is more white, than pink like other  toddlers.

From 6 months  docs put her on folic acid, thats to stabilize the blood count. She is not yet on hydorxyurea, wheatgrass  etc.After talking to couple of  parents and persons having Ebeta and reading posts of this forum I have gained great insight into this disease. There are many people with tahl leading active, married  and professional lives. Its a condition that needs more management. And management has becoem lot easier than 20 years back.

As you are in US you can expect better medical facilities than many places, where thal patients are in much difficult contiditions.And  as Sharmin says, many new treatment options have come up and are on way. Be in touch with any comprehensive thal care centre in Boston/ Philadelphia/New York /Oakland and you will feel better.

Everything will be fine, have faith in God he will protect your son.

Best wishes.



thanks Sharmin and hopefulmommy
« Reply #4 on: December 10, 2008, 06:23:58 PM »
I want to thank Sharmin and hopefulmommy for your replies, I think I have read your replies 100 times, at least, I am still very worried and have no peace of mind, every moment of the day I feel bad that my little baby has to go thru' so much, in his life and I feel I and my husband are responsible for it.
I have not shared this information with our friends as I feel they might pity my son, I am going thru' a mixed of feelings and do not know how to express them, I am also trying to be normal, at home for my daughter, who does not understand the situation, yet, she keeps telling me that mommy do not cry, he will be fine.
It is very nice of both of you to give me some much information, which I am sure will help me a lot.
What are the symptoms that I need to look for so that I know that my son will start needing the transfusion, the thought itslef makes me feels so sad that he will have to undergo so much pain while doing the transfusion, do any of you know how is Dr, Charles Quinn and the Children's medical Center in Dallas in dealing with thal treatment and "Bone Marrow Transplant", if there is any option, to do it?
Where are you located, hopefullmommy?
Sharmin, does the weight gain drastically drops in kids below 1 year, when the HB drops and they need transfusion? WHat are the temporary side-effects for transfuions? Can I ask my doctor to start my baby on soem HB F inducers soon? Pls. advise me. Friends pls. pray for my son and I will pray for your children. My heart goes out for all of you and I am glad that we have each other to share our thoughts.

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    Offline Zaini

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    Re: Dear MomofABabyThalMajor
    « Reply #5 on: December 10, 2008, 06:54:39 PM »
    Dear MomofABabyThalMajor, :hugfriend

    Welcome on the forum,i can understand your feelings and what you must be going through,be strong we are all here for you ,i know it's very hard to get used to every thing but now when i look   at my daughter i don't see any thal,i just see a healthy,active,vibrant and sharp child,she is brilliant with her studies and she got first position on her last sports day in school,You can see her winning pics in the gallery :).

    Just believe in your son and never treat him any different,take good care of him and you'll see that he'll grow as good as any child and will live a full life  :hugfriend.

    Zaini.
    ^*^Xaini^*^

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    Offline Annie

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    Re: Dear MomofABabyThalMajor
    « Reply #6 on: December 11, 2008, 11:29:26 AM »
    hello MomofababyThalMajor,
    welcome to the forum,I know what are you feeling..
    but i want to tell you m a thal major,26 of Age and living a very healthy life..don't worry mam
    we can deal with thal easily,
    Thal major can live a very healthy and long life...they can do everything..
    as little "A" Plays ice hockey isn't dat great?
    don't loose hope..trust in GOD, he is thinking of us.
    your son is going to live a very good life, never let him down..
     just give him proper chelation,medication..and you will see the positive result..
    we all are with you,keep in touch and share your feelings with us
    take good care
    GOD BLESS YOU
    I AM  SUFFERING FROM THALA MAJOR

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    Offline Andy Battaglia

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    Re: Dear MomofABabyThalMajor
    « Reply #7 on: December 11, 2008, 03:42:50 PM »
    Dear MomofABabyThalMajor,

    I contacted Eileeen Scott of the Cooley's Anemia Foundation to make sure you are in good hands at your hospital. This is what she had to say.

    Quote
    (Dr Quinn) Yes - he is great.  I actually went to his hospital, and it was terrific.
    She will be in good hands.  He is on our medical advisory board, and Dallas
    Childrens is one of our thalassemia treatment centers.  I would be more than
    happy to speak to the parents, so please pass on my contact info if they are
    interested. Also encourage them to get in touch with us so that we can add
    them to the patient data so they will receive up to date info.  Thanks!
    Eileen

    Please contact Eileen at eileen.s@cooleysanemia.org  She would love to talk to you and help ease your concerns.

    I can guarantee that you will be feeling much better once you understand more and have more contact with Dr Quinn. Thalassemia patients are living long full lives as long as they get proper treatment and your child will. I know it's a big shock to learn about thal but the shock will pass and the need to do what is right for your child will be what guides you. Please learn as much as you can from the information here. Knowledge is power and it will replace the fear that you now have. Why do I say this with such confidence? Because I have seen it over and over and it will happen. You are in good hands at your hospital and you will have a healthy child. Be confident and assured. I would not say this if it wasn't true. You will find all the support in the world from the great people at this site, so please accept our friendship.  :hugfriend
    Andy

    All we are saying is give thals a chance.

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    Offline Sharmin

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    Re: Dear MomofABabyThalMajor
    « Reply #8 on: December 11, 2008, 06:34:40 PM »
    Dear MomofABabyThalMajor,

    I remember the pain that you are feeling, and it is natural to feel it.  One thing I can tell you from my experience is that I imagined life with thalassemia to be much more terrifying and difficult when he was first diagnosed then it really has been.  He is 10 years old now and I can honestly say that during these 10 years he has probably had less sick days (other than transfusions) than most of the kids in his class, he is as physically strong and intelligent as the other kids his age and all in all he is very normal.  There is nothing about this disease that prevents us as parents from enjoying anything that any other parent can enjoy.  Thalassemia kids walk, talk, play, get educated - and thanks to modern technology they can go to college, get married, have children and live a normal life span.  All of these things make the monthly pokes worth it.  Really, we don't think of transfusions as a hardship to endure anymore - he loves going to the hospital because he gets so much attention and he has mom all to himself for the day.  In fact, when he heard that there may be a cure for thalassemia he cried his eyes out because he likes his life the way that it is.  He said that he would miss the nurses and playing Wii at the hospital. 

    During one of our follow up appointments, when little A was 6 years old we asked the thalassemia doctor - "Is this it?  The thalassemia thing?  Other than transfusions life is very normal and nothing is different about him".  The doctor chuckled and said "This really is it, thalassemia is not the monster it once was - it is just maintenance".  In fact, if you think about asthma, diabetes or epilepsy these diseases can happen to anyone - and they require maintenance just like thalassemia.  I learned a lot from a friend whose son has spina bifida - when my son began walking at 10 months of age she told me "See, I told you not to worry about him - look you see your son walking at 10 months of age - I have been waiting for 13 years and chances are I will never see him walk".    I remember this everytime I watch my son play a soccer game or score a goal in hockey - and I tell myself that the little poke he gets monthly or the chelation is worth the wonderful and healthy life he is able to live. 

    I know that this will not make all of the feelings go away immediately, but over time I hope that it helps.  I know that we, as parents become depressed because we feel a loss for the normal life that we wanted for our child - but at the same time I want you to know that your child has not lost that "normal" life.  You will get through this initial shock at your own pace, but when you do we must remember that our children feed off of our attitudes and courage - if you begin to embrace the beautiful life and opportunity your child has despite this disease - he will embrace it too.  Your child will amaze you have faith in him - and have faith that he will live a healthy, normal life and life span. 

    Wishing you all the best - and we are all here to guide you in helping raise a healthy thalassemia child together.  The advice that Andy has given you and the center he has told you about will make it all possible. 

    Best of luck and please keep posting so we can help you through the emotions that you need to go through right now,

    Sharmin
    Sharmin

    thanks Sharmin, Andy, Annie and Zaini
    « Reply #9 on: December 12, 2008, 02:19:24 AM »
    I cannot express my thanks to all of you for your kind words. It really makes me think and believe that with time everything will fall in place in my life and my baby will be fine, though he has many hardships but he will overcome them,,,,,thank you, my friends.

     

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