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my new baby just diagnosed with thal major pls help

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Offline nanuaru

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Re: my new baby just diagnosed with thal major pls help
« Reply #15 on: October 30, 2008, 01:22:51 PM »
Hi Avasmom,
   I don't know wether to console you or give advice like others . My cutiepie is 16 months old and was diagnosed thl maj when she was three months old since then she is having reg. BT .Iron chelation has not yet started . she is quite bright baby and very naughty only time i remember about her condition is when we go for BT every month . PL do continously give your child folic acid and zinc drops after checking with your physcisian also calcium is very important for her growth .
   Don't treat her any diffrently she needs both love as well as discipline for her good growth never discriminate her or favor with any of these two .
          Keep POsting
                                   FAther OF cutiepie
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Offline Laura

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Re: my new baby just diagnosed with thal major pls help
« Reply #16 on: October 30, 2008, 10:13:43 PM »
I totally agree with you nanuaru. It is very very important to be treated as the rest of people. You can't imagine how it is to feel and to be seen like a normal person among the rest and not someone different to whom the rest have to take care of. That helps the patient to grow up psychologically healthy, what is very important to assume the disease and to face the world when he reaches the puberty and then in the adult life.

Kisses,

Laura.
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Offline Gabri

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Re: my new baby just diagnosed with thal major pls help
« Reply #17 on: October 31, 2008, 09:36:31 PM »
Welcome Avasmom and congratulation for your wonderful, cute baby.

 :congrats
Even if it is shocking for you now to know thal your little angel is a thal, and your heart is breaking because of the sorrow, I can assure you that there will be also a lot of day full of joy, gladness and proud because of her. Your baby can grow like each other person, she only has a little handicap consisting in transfusion and later also iron chelation. But she can reach a lot of goals in her life if you will be there to transmit her love, self-assurance  and self-reliance.

God bless you

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Offline Zaini

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Re: my new baby just diagnosed with thal major pls help
« Reply #18 on: November 01, 2008, 07:19:34 PM »
Quote from: Gabri on October 31, 2008, 09:36:31 PM
Welcome Avasmom and congratulation for your wonderful, cute baby.

 :congrats
Even if it is shocking for you now to know thal your little angel is a thal, and your heart is breaking because of the sorrow, I can assure you that there will be also a lot of day full of joy, gladness and proud because of her. Your baby can grow like each other person, she only has a little handicap consisting in transfusion and later also iron chelation. But she can reach a lot of goals in her life if you will be there to transmit her love, self-assurance  and self-reliance.

God bless you



Well said Gabri  :clapcheergirl

Zaini.
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Offline Andy Battaglia

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Re: my new baby just diagnosed with thal major pls help
« Reply #19 on: November 01, 2008, 08:08:20 PM »
I am happy to report that Ava has visited Chicago Children's Hospital and will be a patient of Dr Thompson. CCH is one of the Comprehensive Care centers in the US for treating thalassemia and Ava is in very good hands there.
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Offline Sharmin

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Re: my new baby just diagnosed with thal major pls help
« Reply #20 on: November 01, 2008, 09:29:22 PM »
Ava's family,

I would also like to congratulate you, your beautiful little baby will be getting the best care possible. 

When parents first receive a diagnosis of thalassemia for their child, they begin to mourn a loss.  They mourn the loss of a normal and healthy life for their child.  As a mother of a thalassemia major child, let me help you realize that this is only a perceived loss - in reality you and your child can have the life that you had hoped for for your child.  With proper care, she can do anything that you give her the confidence to do - maybe even more. 

Thalassemia is less well known and understood in society than other chronic conditions, therefore we are afraid of what it means to our lives.  One day, once you settle into a routine of transfusions and chelation - and your little girl reaches all of her milestones one by one - amazing you all the while - you will find yourself saying "is this it?  this thalassemia thing?"  Just like people deal with asthma, diabetes or any other chronic condition - you can live with thalassemia.  Remember, Ava is NOT sick - and she needs the same encouragement and discipline as any other child.  Don't let thalassemia define your child, let her personality and accomplishments define her.   From reading your posts I know that Ava is part of an amazing family - between your attitudes and the wonderful hospital she is going to be treated at - Ava's future is very bright. 

Congratulations on your beautiful little girl:):)   :congrats

We are all here for you if you have any questions along the way - we feel fortunate to have you as part of our family:) 

Love,
Sharmin
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Sharmin
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Kathy11

Re: my new baby just diagnosed with thal major pls help
« Reply #21 on: November 01, 2008, 10:10:19 PM »
Congratulation!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! to the Avas' family, :flowers :flowers :flowers :flowers

A child birth is a gift from god. take one day at a time enjoy the blessing.
With good management this child can become the leader of her country.

Remove fear from your heart and  your life and your  childs' life with be flowing with happiness.

there are always  someone worst off than us.


Good wishes from Kathy



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Offline avasmom

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Re: my new baby just diagnosed with thal major pls help
« Reply #22 on: November 04, 2008, 06:18:51 PM »
                                       :biggrin :biggrin

                        i just wanted to thank u all for your input it has been so helpful . i appreciate each and every one of u for taking the time to look over my post,and taking the time to answer. you all have been more helpful then u will ever know,
                              ANDY,  i just wanna thank u from the bottom of my heart for informing me about childrens memorial hospital!!!!the hospital i initially found out my daughters diagnosis at was so negative, they had no bedside manner, they were tellin me we will start transfusions at 4 months , she would be on the chelation pump until she was 2,they wanted her to go into surgery to get a port,and that she would have to get a liver biopsy every two and a half years , the doctor was getting frustrated with my questioning and i left that hospital devistated!
                        when u told me about childrens i immediatly looked into it they have a wonderful program, and wonderful staff of people who specailize in thal!!!!!.no port,no chilation pump,no set date for transfusions, when her level starts to drop we will begin the transfusions.when she is 2 she will begin oral chilation, no liver biopsys ever, they can messure the iron in the liver through mri, they were so informative and they also have genetic counseling so that me and my husband can have another baby, that will not carry thal , and at that time, they will beable to use the new babies cord blood to give ava what she is lacking , and hopefully cure her, i now strongly believe that my daughter will not live her whole life with this disease , they are doing so much research and i believe a cure is near.i left that hospital feeling great!!and i just want to thank u again , because with out your one little comment my daughter would have been so much worse off!!you are truly a life saver!! god bless u and thank u again!!!!!
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Offline Narendra

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Re: my new baby just diagnosed with thal major pls help
« Reply #23 on: November 04, 2008, 07:54:14 PM »
A huge relief for us too. Getting through the gloomy outlook itself is a big move. Very glad everything turned out so well. I hope more people visit this site to get the support and less people get doctor's like the one Ava got when she was diagonised. That is one thing, I thought would never happen in US, but to my dismay, it also happens here in USA, where doctor's are not up to date on what new developments are their in treatment and cure.
« Last Edit: November 04, 2008, 08:27:40 PM by Narendra »
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Offline Andy Battaglia

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Re: my new baby just diagnosed with thal major pls help
« Reply #24 on: November 04, 2008, 09:56:22 PM »
The value of being treated at one of the Thalassemia Comprehensive Care centers or one of their satellite hospitals, or at the VERY LEAST, an annual visit to one of the centers, cannot be emphasized enough. Being treated at a hospital that understands thalassemia and its treatment will make a huge difference in the quality of life of thalassemia patients.

We can and do make a big difference in many lives.
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Andy

All we are saying is give thals a chance.
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Kathy11

Re: my new baby just diagnosed with thal major pls help
« Reply #25 on: November 04, 2008, 09:58:18 PM »
Goodmorning to everyone,

It made my day reading the good news from Avasmom,

I am happy for our new little member of this site,It sound promising and i'm so glad that she has received good medical care.


There is hope for all, we need to "believe"
I would also like to thank Andy, Sharmin,Manal and Zaini      :hugfriend :hugfriend you are the pillars that keep me strong,
I love you guys.I'm lucky to be understood by you.You are all very special, kind, human-beings
It's another  days, I'm looking forward for good things to enter mine and everyones" life




Always  Kathy




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Offline Manal

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Re: my new baby just diagnosed with thal major pls help
« Reply #26 on: November 05, 2008, 12:19:39 AM »
To Avasmom

I am so happy that you finally feel safe and know your steps, good luck in everything and please keep posting :hugfriend :goodluck

To Kathy

You are welcome my friend, you are so dear to my heart :bighug and believe me you  have made a lot of difference in many situations in my life more than you can imagine. Thanks

manal
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Offline Sharmin

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Re: my new baby just diagnosed with thal major pls help
« Reply #27 on: November 05, 2008, 12:41:04 AM »
Avasmom,

We are so glad that you found us!  Andy has changed a lot of lives and the guidance he gives us is truly lifesaving.  Honestly, the center at which you are seen determines your's and your child's quality of life.  We are all happy that you are in good hands! 

Make sure you get that genotype testing - which prevents that only complication that we can foresee.  Everything will be great. :goodluck

Kathy,

Thank you for your kind words and encouragement:)  We all adore you and thank you for all of the support and wisdom you share with us all. 

Take care,

Sharmin
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Sharmin
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Offline Zaini

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Re: my new baby just diagnosed with thal major pls help
« Reply #28 on: November 05, 2008, 04:10:21 PM »
Avasmom,

I can actually feel your relief  :hugfriend i am happy for you and for Ava, i wish i could hug her and tickle her  :rotfl i love small kids laughing and smiling.

Kathy,

Awww.. :wub :wub i am blushing now  :rotfl.
You are so valueable to this forum my dear.

Zaini.
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Offline Bostonian_04

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Re: my new baby just diagnosed with thal major pls help
« Reply #29 on: November 05, 2008, 07:45:09 PM »
Hello avasmom,

your experience is very similar to ours...as Andy has rightly said the importance of being seen at one of the Thalassemia Comprehensive Care centers....we go to Boston Children's now and our entire outlook towards Thal changed after that. Also these comprehensive centers have good support structures for the entire family.

In addition, can't say enough about support from Andy and this group....Always there to lend support and advise. Thanks to Andy and the entire Thalpal group.

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