The Goal For Thalassemia Patients Today...

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Offline Pratik

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Re: The Goal For Thalassemia Patients Today...
« Reply #15 on: November 13, 2012, 01:53:36 PM »
That's just inositoll I believe.
« Last Edit: November 13, 2012, 07:32:09 PM by Pratik »
Every child is special.

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Offline Andy Battaglia

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Re: The Goal For Thalassemia Patients Today...
« Reply #16 on: November 13, 2012, 03:21:14 PM »
Yes, inositol is not the same. IP6 is inositol hexophosphate or phytic acid.
Andy

All we are saying is give thals a chance.

Re: The Goal For Thalassemia Patients Today...
« Reply #17 on: January 26, 2013, 02:30:07 PM »
Dear All,

I am a new member, my son Ryan is 2.5 years old and is having Beta Thal Major. He was doing preety good all this time and was maintaining a Hb level of 8.8, but about5 months back he had viral fever and since then his Hb level has fallen down to 7.2 and he is constantly keeping upto that. He is otherwise preety active and his growth is just okay. I want to be guided as to when is the requirement for transfusion?

I live in Kolkata, India and want to know about any care centre in the city where I can contact for the best advice. I want to give a normal life to my son and am ready to do all it takes.

Please guide me.

Regards
Benjamin Dcruze

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Offline Andy Battaglia

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Re: The Goal For Thalassemia Patients Today...
« Reply #18 on: January 26, 2013, 03:29:40 PM »
Hi Benjamin,

Has your son transfused before?
Andy

All we are saying is give thals a chance.

Re: The Goal For Thalassemia Patients Today...
« Reply #19 on: January 28, 2013, 04:33:56 AM »
Hi Andy,

My son has not been transfused till now, but last few months his Hb level has come down to 7.2, when is the correct time to transfuse.

Regards
Benjamin Dcruze

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Offline Andy Battaglia

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Re: The Goal For Thalassemia Patients Today...
« Reply #20 on: January 28, 2013, 03:41:42 PM »
Benjamin,

The standard rule to begin transfusions is two consecutive Hb readings below 7. From what you have told us, your son is more likely a thal intermedia than major, but may be an intermedia that will eventually require transfusions.
Andy

All we are saying is give thals a chance.

Re: The Goal For Thalassemia Patients Today...
« Reply #21 on: January 29, 2013, 05:50:46 AM »
Thanks for the support.

Regards

Re: The Goal For Thalassemia Patients Today...
« Reply #22 on: January 31, 2013, 03:39:17 PM »
Hi All,

What are the test which I can do for my son to ensure that his liver, kidney and spleen are funtioning properly. The local doctor here does a check though by touching his stomach.

Regards
Benjamin

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Offline Himanshu Kumar

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Re: The Goal For Thalassemia Patients Today...
« Reply #23 on: January 31, 2013, 04:02:24 PM »
The doctors try to feel the enlarged liver and spleen through physical examination of the abdomen. They press the abdomen and try to get a sense of how large the spleen or the liver has grown. One can feel the spleen when it is a little large. Some expertise is required to do a physical examination. Functioning of Kidney cannot be ascertained by physical examination of abdomen or the back.
Regular transfusion, Keeping pre transfusion HB above 10 and Iron Chelation are the three mantras for thals to stay healthy.

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Offline aus

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Re: The Goal For Thalassemia Patients Today...
« Reply #24 on: February 09, 2013, 02:46:28 AM »
Hi,

I would like to know more about developing antibody. Jia, my son developed an antibody 3 years ago and now has to have blood with Kell group antibody. This has limited his chances of getting blood easily. However, we haven't had any issues yet, thus far.

On another note, Jia is now playing badminton 3 times a week. I find that he is now capable of doing serious exercise. Should there be any limitation to how much sports he can do? He was just told to avoid contact sport as much as possible due to the difficulty in getting blood. Otherwise, the hospital hasn't advised us against sports at all.

Hooi

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Offline Andy Battaglia

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Re: The Goal For Thalassemia Patients Today...
« Reply #25 on: February 09, 2013, 02:56:32 PM »
The only limit is what the Hb level puts on a patient. Contact sports should be at a minimum to avoid accidents that could cause broken bones. If he has the energy, let him get as much exercise as he can. Exercise helps to optimize the oxygen available, so it is a huge positive for thals.
Andy

All we are saying is give thals a chance.

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Offline MikeD

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Re: The Goal For Thalassemia Patients Today...
« Reply #26 on: February 10, 2013, 02:11:09 AM »
I am curious to know how closely most thals follow the reccommendation of no contact sports or similar. I had some discussions with a mother to a young lady- alyssa that was featured on Cooley's anemia foundations website.  She mentioned that her daughter lives a completely normal life outside of her monthly transfusions and at age 25- earlier in life she regularly participated in cheerleading, her daugter being one of the girls thrown up in the air.  I know that was slightly inspiring to me as I have aspirations of getting my son on a snowboard as soon as he learns to walk.  Thoughts?

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Offline Pratik

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Re: The Goal For Thalassemia Patients Today...
« Reply #27 on: February 10, 2013, 06:01:55 AM »
I am curious to know how closely most thals follow the reccommendation of no contact sports or similar. I had some discussions with a mother to a young lady- alyssa that was featured on Cooley's anemia foundations website.  She mentioned that her daughter lives a completely normal life outside of her monthly transfusions and at age 25- earlier in life she regularly participated in cheerleading, her daugter being one of the girls thrown up in the air.  I know that was slightly inspiring to me as I have aspirations of getting my son on a snowboard as soon as he learns to walk.  Thoughts?
I too saw that article. She also goes to Gym if I'm not wrong and shes beautiful!

Modern definition of thals has changed. I'll be now starting gymming as well and I lift weights at home since past 2 months or so, and it has only made me stronger and slightly bigger. CAF also stresses the point to let your child indulge in physical activities, and after he grows up enough old (like 16 or so), he/she should also try to lift light weights or do anti-gravity exercises like pushups, pullups which exerts resistance. Doing so, the bone mass will increase and will only make your child grow stronger.

I myself was a badminton player and represented school until my 9th grade.

So don't let your child hold back, let him fly!

-P.
Every child is special.

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Offline MikeD

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Re: The Goal For Thalassemia Patients Today...
« Reply #28 on: February 10, 2013, 03:17:08 PM »
So good to hear Pratik....  As you can imagine, as father there is so much that i am looking forward to sharing with my son and i do not intend to hold back any more than i have to. I plan to give him the best and most memorable life there ever was.  At nine months we already share so much together I can only imagine what the future holds for us!

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Offline Sharmin

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Re: The Goal For Thalassemia Patients Today...
« Reply #29 on: February 13, 2013, 08:17:26 PM »
Dear Mike,

If a thal major is properly transfused he will not have an enlarged spleen and contact sports should be fine.  My 14 year old son plays ice hockey, soccer and basketball - and we have never limited him from anything.  He skiis and will begin snowboarding soon as well.  He has always been an excellent athlete - his coaches are not aware of his thalassemia. 

I hope that this addresses your concern,

Sharmin
Sharmin

 

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