Introduction

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Introduction
« on: January 08, 2009, 01:35:33 AM »
Hello -
We are Frank and Dana.  We just joined this group and wanted to introduce ourselves.  Our 2 and 1/2 year old was diagnosed with beta thalassemia major and began monthly transfusions in November.  She had been monitored for about 1 and 1/2 years (diagnosed at age 1). 

We look forward to getting to know everyone and sharing information.

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Offline Sharmin

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Re: Introduction
« Reply #1 on: January 08, 2009, 02:22:12 AM »
ocwoodmanp,

Welcome to the website! We look forward to reading your posts and getting to know you better.  We are happy to help with any questions that you may have.

Sharmin
Sharmin

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Offline Lyanne

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Re: Introduction
« Reply #2 on: January 08, 2009, 05:43:43 AM »


WELCOME guys! you come to the right place just keep us informed about all your concerns and as Sharmin said we are here to answers your concerns or problems you may have about thalassemia  :hithere :welcomewagon  :bighug
LYANNE :yahoo

Re: Introduction
« Reply #3 on: January 08, 2009, 02:43:41 PM »
Welcome. Please visit regualarly and keep yourself updated.
Regards.

Re: Introduction
« Reply #4 on: January 08, 2009, 03:18:17 PM »
Thank you all - we really appreciate it!  This is all so new to us.

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Offline Dori

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Re: Introduction
« Reply #5 on: January 08, 2009, 04:18:13 PM »
 :welcome on board. I hope you will have a good time here. Keep posting and ask questions.

:flowers

Dore
(21yr. not thal but pyruvate kinase deficiency)

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Offline Zaini

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Re: Introduction
« Reply #6 on: January 08, 2009, 06:13:33 PM »
Hi Frank and Dana,

Welcome on the forum,keep visiting the forum as it will help you a lot in managing your daughter' health.

Zaini.
^*^Xaini^*^

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Offline Manal

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Re: Introduction
« Reply #7 on: January 09, 2009, 01:45:06 AM »
A big welcome for you :wink

manal

Re: Introduction
« Reply #8 on: January 10, 2009, 01:30:49 AM »
Welcome!

Our daugher turned 3 in September so we are quite close age wise.

Transfusions start off scary and chaotic but things do improve and children (as well as parents..) adapt to circumntances wonderfully.

Like we tell our friends, who never believe us and think it's just feel-good talk, It's our children who help us to get through this all rather than the other way around.



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Offline nice friend

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Re: Introduction
« Reply #9 on: January 11, 2009, 08:25:45 AM »
Hi ocwoodmanp ,
 :welcomewagon :welcomewagon :welcomewagon
 :welcomewagon :welcome to the family .  :welcomewagon
 :welcomewagon  :welcomewagon :welcomewagon

Take care
Best regards
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline Rakin

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Re: Introduction
« Reply #10 on: April 20, 2009, 10:58:37 AM »
Hi!
This is Shahed from Bangladesh. My wife Mou is 29 yrs old and 28 weeks of her pregnancy (First time). When she was 25+ week of pregnancy we found she is a thalassemia patient and her Hb level is 5.8. then according to doctors advice she take her 1st unit of blood at 29/03/09 and 2nd &3rd took 13th & 16th of April 09 accordingly. Next 30/04/09 we are goingto visit the Doc. Again after 1st transfusion her hb is 6.5. Her BP is sometime 140-150/80-90. She got her feet water full. Doctor told not to eat read meet and iron enrich fruit & vegetable. In this regard I need your valuable suggestion and some the name of some fruit and vegetable (Iron free/less iron) she can consume. Her medication is Seredopa (for BP), Vitamin D, folic acid, vitamin E.
Rakin is the name of my coming son (Tentative date of coming is 26 june 09)

looking forward for your valuable suggestion (Honestly I am very worried)

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Offline Lyanne

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Re: Introduction
« Reply #11 on: April 20, 2009, 11:32:32 AM »


    Welcome! You have come to the right place. I do hope you feel at home here and feel free to speak your mind.  :hugfriend
LYANNE :yahoo

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Offline nice friend

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Re: Introduction
« Reply #12 on: April 20, 2009, 12:54:22 PM »
Hi Rakin ,
 :welcome2 , wish you all the best :goodluck

lots of good wishes
& Best Regards
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline Narendra

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Re: Introduction
« Reply #13 on: April 20, 2009, 01:04:14 PM »
Welcome to the group Shahed,

Be assured you have come to the right place for your questions/worries. There are quite a few members here, who have very valuable information and can guide you with useful tips.

So, do you mean to say Mou was found to be a thal(intermedia) patient. If so, thal(intermedia) can be diagonised at later stage during their lives and pregnancy is one of those stages where the body requires more blood and most of the time the HB levels go down, so it is very important to keep the HB levels in check. It is good the doctor's are taking care of that part.

The doctor's mentioned not to eat Iron rich food is because they are worried about Iron overload as she had got few transfusions and due to that the iron levels increase in the body. It might not be too much, but she will need iron chelation if her ferritin levels keep increasing.

Thal(Intermedia) patients are advised to drink tea with meals to reduce iron absorption through the gut.

You have taken a very nice step and joined the site for your queries. Keep asking questions and help your wife manage her health.

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Offline Andy Battaglia

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Re: Introduction
« Reply #14 on: April 20, 2009, 03:04:16 PM »
Hi Shahed and welcome,

From your PM I learned that your wife is HbE beta thal, which is common in eastern India and Bangladesh. Often this manifests as thal intermedia but of course this can change during pregnancy, and as is the case with your wife, transfusions can become necessary. Hopefully, once she has the child, she will no longer need transfusions. Have you been tested also? This is important as you need to know if there is a possibility your children will be thal majors.

As far as diet, red meats are high in iron and should be kept to a minimum, if at all. Your wife should avoid citrus fruits like oranges and lemons during meals. These fruits can be eaten but they help iron to be absorbed so they should be avoided during meals and instead taken as snacks. The iron from fruits and vegetables is not as easily absorbed as the iron from meats, so not as much caution needs to be taken. High iron veggies likes the dark green vegetables such as spinach should not be eaten in large amounts but it is OK to have them occasionally. The nutritional value of most fruits outweighs the small amounts of iron that they carry and should not be avoided. If you want to give us a list of foods you want to know about, that would help. Fruits like pomegranate and berries are very good sources of many vitamins and minerals and are also good antioxidants. Your wife would also be advised to take a B complex vitamin, as this helps build blood cells. As Narendra has pointed out, drinking tea with meals helps inhibit iron absorption from food. Milk products will also help prevent iron from being absorbed.

Do not be concerned if she requires regular transfusions during the pregnancy, as this is normal and even some thal minors will require transfusions when pregnant.
Andy

All we are saying is give thals a chance.

 

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