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I am new please I want advise!

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Offline bopbopdedoup

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I am new please I want advise!
« on: October 17, 2009, 07:53:54 AM »
Hello I am new here. My son Dimitri (at the time 4 years old) was first diagnosed with Thal minor and something else 7 years ago in Athens Greece. After years of research two days ago he was verified that he also has Sideroblastic. Sideroblastic is a type of anemia that doesn't even allow any iron or oxygen in the blood so he has lots of extra iron floating around in his body as well. So, he is looked at as Thal Intermedia. We now live in Utah, USA and have been fortunate to have a great doctor out here. We start our scheduled treatment next month. After all the studies over the years of what Thallassemia b is, now that we are starting a new way of life, come to find out there is still so much more to learn to better the quality of Dimitri's life. He also has a sister (6 years old) who's blood work looks similar, but has not been verified yet nor has she had symptoms like her brother. I do fear that she has the same fate as Dimitri. I am still in shock even though I knew the possibility was there. So, forgive me if I come across ignorant. I want to understand more about the process of treatment not from a doctor, but from other families experiences. I look at the pictures of other members and it gives me hope of continuing a normal life with some tweaks here and there. Please anyone willing to help me through this time to get back on my feet emotionally to help my boy have the best quality of life, and accomplish every dream he may endure.

Thanks,

Amber
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Offline Lena

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Re: I am new please I want advise!
« Reply #1 on: October 17, 2009, 08:09:21 AM »

Welcome to the site, Amber.

First of all, do not let your kids and especially your son see your panic. This is too important. Secondly, there is no reason you should be in panic. I do not know much about your son's condition -- that's why I'll let others more experienced to talk -- but I do not think it is something uncontrollable. I have been a thal major my whole life, I live in Athens, happy to have a very good doctor, I comply with the therapy given and lead a normal life. I understand your first shock, but since I am able to look at it cooler than you do, I tell you it is not something that cannot be controlled and your son's life will be as normal as you allow it to be.

Lena.
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Offline nice friend

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Re: I am new please I want advise!
« Reply #2 on: October 17, 2009, 01:32:07 PM »
Hi ya Amber ..
 :welcome2 ....

Best Regards
Umair
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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 Zaini

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Re: I am new please I want advise!
« Reply #3 on: October 17, 2009, 05:28:06 PM »
Hi Amber,

Welcome on the forum,I agree totally what Lena said,i can understand the shock,because we all have been through that :hugfriend .

If your son in considered to be Thal Intermedia,what is his hb ? Intermedias tend to maintain a certain level of hb,and usually its lower then normal obviously,and in the long run,low hb makes body to absorb more iron from food,which in Dimitry's case will float in blood,i have a few tips for you,although please keep in mind that i am not totally familiar with the other disorder you are talking about,but i can give you tips about thal intermedia.

Strat giving him tea after every meal ,this will inhibit iron absorption from food,try to avoid red meat and green leafy vegetables like Spinach,supplements help a great deal in any kind of thal,please read our "Diet ,Nutrition and Supplements" section.IP6 or Inositol Hexaphosphate is a natural chelator and antioxidant,which will be helpful for him.

Do you know ho much is his ferritin (iron) level?

Feel free to ask any questions you have in mind :yes .

Zaini.
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Offline Lyanne

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Re: I am new please I want advise!
« Reply #4 on: October 18, 2009, 10:34:42 AM »


 Welcome! Hope you find your queries answered. You have come to the right place! :hugfriend
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LYANNE :yahoo
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