My new born baby has possible Thal major

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Offline Andy Battaglia

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Re: My new born baby has possible Thal major
« Reply #30 on: January 24, 2009, 10:25:34 PM »
Not to blow my own horn, or our own horn, but what Sharmin said is very true. Her son is a good example of what can happen when you put into practice what is learned here. I think the same can be said for Zaini and Manal and others and how well their children do because they follow good recommendations.

And I'm going to add something here that I believe is extremely important for thals but has been largely ignored. Studies have shown that those who are low in magnesium have a higher rate of gallstones. That alone is very interesting but when you put it in the context of thalassemia, a path develops. When I read about this study, I asked some questions.
What are gallstones caused by? Excess bilirubin.
What causes excess bilirubin? Hemolysis-the breakdown of red blood cells.
What is common here? Magnesium.

Magnesium depletion in RBCs causes a breakdown of the RBCs, creating bilirubin, which builds up and eventually leads to gallstones. So the question arises.
Can magnesium supplements slow down hemolysis and help to prevent gallstones? I want to know and I hope some patients will give this a try and see if their bilirubin levels change at all after magnesium supplementation. I do feel that magnesium should be taken with calcium and vitamin D, so please, do use all three.

We are breaking new ground in this group and if patients and parents are wiling to try, we will get answers to many questions. We are becoming a real force in the world of thal and I do mean we. Our community can lead and help improve life for thals around the globe.
Andy

All we are saying is give thals a chance.

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Kathy11

Re: My new born baby has possible Thal major
« Reply #31 on: January 24, 2009, 11:02:24 PM »

Never underestimate what you learn here - and never forget to ask questions if you have them.  The answer to your question could save a life. 

Sharmin

Dear friends
I believe that this forum has thaught me how to manage and extended my life, I have not look back .Since I  joined  this group,it gave me strength, I have been able to ask for the required care from medical Professionals,
I have been able to get my illness under control ,
I've learnt so much about my  condition and still learning.

To top it all ,   I've met some wonderfull people that enhance my life,

 For all the above I  am full all gratitude

For me personally ,It is special and I do love everyone of my friends in my own special way.
I feel richer for it   Thank-you, to everyone for being there when I needed you the most
You know who you are no need to mention names

Kathy

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Offline Dori

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Re: My new born baby has possible Thal major
« Reply #32 on: January 24, 2009, 11:09:31 PM »


And I'm going to add something here that I believe is extremely important for thals but has been largely ignored. Studies have shown that those who are low in magnesium have a higher rate of gallstones. That alone is very interesting but when you put it in the context of thalassemia, a path develops. When I read about this study, I asked some questions.
What are gallstones caused by? Excess bilirubin.
What causes excess bilirubin? Hemolysis-the breakdown of red blood cells.
What is common here? Magnesium.

Magnesium depletion in RBCs causes a breakdown of the RBCs, creating bilirubin, which builds up and eventually leads to gallstones. So the question arises.
Can magnesium supplements slow down hemolysis and help to prevent gallstones? I want to know and I hope some patients will give this a try and see if their bilirubin levels change at all after magnesium supplementation. I do feel that magnesium should be taken with calcium and vitamin D, so please, do use all three.


Andy,
That is exactly why my galbladder was taken out at the age of 3.
I do take calcium daily (when i do not forgot it, what happens 4 days a week). I take them all the three. (I am not sure about calcium, but that is an other discussion).

Very stupid question:
They can check your billirun levels? They never do and I am sure they never will do when I ask for that. You need others for that and not only my intuition.  :wink

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Offline Sharmin

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Re: My new born baby has possible Thal major
« Reply #33 on: January 24, 2009, 11:23:24 PM »
Okay guys,

I am totally going to brag - little A's team lost 3 - 1 today - and little A had the only goal for his team.  He is scoring at least 1 or 2 goals every game.  This is the same boy who was having a hard time keeping his hg and energy up last year.  You cannot imagine the confidence it gives him to be good at something and to contribute to his team this way - thank you all so much for helping my little guy get here.  Every child with thal can reach their dreams and be their best!
 :thankyou2


Sharmin


Dore, it is possible to measure bilirubin.  You can ask your doctor for the test. 




Sharmin

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Offline Zaini

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Re: My new born baby has possible Thal major
« Reply #34 on: January 25, 2009, 08:46:59 AM »
A little bragging for me too  :wink

Just yesterday,my sister was laughing her head off,what happened was that my cousin ,who is a doctor,came to our place,and i was asking her about genotyping,she said it's kinds DNA analysis,i said yes i know and it's done on WBCs,she said WBCs? no RBCs!! I said but RBCs don't have a nucleaus,you must know that,and she got so embarraced and said yes i forgot.My sister said oh you can't win my sister she loves biting doctor's heads off now a days, :rotfl and she can do that beacuse she keeps searching and learning,while you doctors have stopped doing so  :wink.And this is all due to this forum. :lovethissite

About Magnesium,Little Z has also started taking Osteocare,it's kinda expensive here as it's imported from UK,but well,if it helps her stay healthy,i'll manage it somehow.

I believe one tablet is enough for her daily? because it says so on the website under the chewable ones,and the chewables and tabs have the same formula.

What is a bit strange is that the Osteocare i am getting here,it's pack is different from what is shown on site,and even the formulation isn't same,On site it says it contains Manganese,Copper,Selenium and Boron too,but the pack i got says Calcium,Magnesium,Zinc and Vitamin D only?Any thoughts?

Zaini.


« Last Edit: January 25, 2009, 08:58:21 AM by Zaini »
^*^Xaini^*^

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Offline Sharmin

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Re: My new born baby has possible Thal major
« Reply #35 on: January 26, 2009, 03:03:49 AM »
Zaini,

You're brilliant :) 

Let me do a little research for the Osteocare, I will get back to you.  I think that the trace minerals are a very important part of the Osteocare and are very important for bone health.  In the meantime it is great that you have started her on the Osteocare as I have heard a few people say that they have had minteral dificiencies after beginning Exjade (however I don't know if there is any connection at all or not.) 

Sharmin
Sharmin

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Offline nice friend

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Re: My new born baby has possible Thal major
« Reply #36 on: January 26, 2009, 02:31:35 PM »
 :agree Wat Andy has said :
Quote
We are breaking new ground in this group and if patients and parents are wiling to try, we will get answers to many questions. We are becoming a real force in the world of thal and I do mean we. Our community can lead and help improve life for thals around the globe.

Wat Kathy has said : Same happened to me when i joined this group ...
Quote
I believe that this forum has thaught me how to manage and extended my life, I have not look back .Since I  joined  this group,it gave me strength, I have been able to ask for the required care from medical Professionals,
I have been able to get my illness under control ,
I've learnt so much about my  condition and still learning.

To top it all ,   I've met some wonderfull people that enhance my life,

 For all the above I  am full all gratitude

For me personally ,It is special and I do love everyone of my friends in my own special way.
I feel richer for it   Thank-you, to everyone for being there when I needed you the most
You know who you are no need to mention names

Wat Sharmin has Said : this site and its members gave me as well ...
Quote
I am totally going to brag - little A's team lost 3 - 1 today - and little A had the only goal for his team.  He is scoring at least 1 or 2 goals every game.  This is the same boy who was having a hard time keeping his hg and energy up last year.  You cannot imagine the confidence it gives him to be good at something and to contribute to his team this way - thank you all so much for helping my little guy get here.  Every child with thal can reach their dreams and be their best!

As Zaini has Said : This site taught me as well ,
Quote
Just yesterday,my sister was laughing her head off,what happened was that my cousin ,who is a doctor,came to our place,and i was asking her about genotyping,she said it's kinds DNA analysis,i said yes i know and it's done on WBCs,she said WBCs? no RBCs!! I said but RBCs don't have a nucleaus,you must know that,and she got so embarraced and said yes i forgot.My sister said oh you can't win my sister she loves biting doctor's heads off now a days,  and she can do that beacuse she keeps searching and learning,while you doctors have stopped doing so  .And this is all due to this forum

and now i m able to give answers to anyone's concerns about thalassemia and able to tell them how to manage it ... now i can discus about my case to my doctor , now i can manage my self by the grace of ALLAH (GOD) .. now i can tell others wat kind of treatments they need at their stages (i also tell them to ask about it to your doctor before starting this treatment ). .. now my cousins , my doctor , my all other relatives all says that " chamaktay he ja rahay ho kounsi cream lagatay hoo ?? ( you're getting shiny day-by-day which cream you are using ??) "  soo that is the change thyour advices and guidence bring in my life and of-course The needles which Andy sent me , that worked alot for me . those needles increased the rate/average defseral Vials per week, it was difficult to use 9 vials in a week ( 3 pricks ) , wit that neddles i bcame able to take 12 vials per week and that show's its effects in drop in my S.Fe ... now i know wat is good and wat is bad for me that is a big change ....
 :thankyou2 Andy , :ty
 :thankyou2 All the members of this site for everything . :ty
 :thankyou2 to the entire site .
 :thankyou2  Thanx Alot ,

hey dont think that i m gonna leave you, so you can enjoy the stay on this site , i will keep annoying you All , you cant stay safe to my junk posts hahahaha ... i m always there to send out of topic messages :wink ... As i said somewhere in my previous posts under the topic story of my visit  " God set me on this site to Annoy peoples " .... i m doing my job and will never quit , bcoze i like this job .. hahhahaah

Best regards
Take care
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 Zaini

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Re: My new born baby has possible Thal major
« Reply #37 on: January 26, 2009, 03:10:28 PM »
Keep annoying little brother  :wink because we are so used to of you annoying us that if you won't annoy us we'll get annoyed that why aren't you annoying us? isn't that annoying ?  :rotfl :rotfl

Zaini.
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Offline nice friend

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Re: My new born baby has possible Thal major
« Reply #38 on: January 26, 2009, 07:32:04 PM »
Hi Zaini Sis ,
yeah in my presence any out sider annoy you people i cant tolerate it , and i will never let it happen ( its my job only :grin ) ...

Quote
What is a bit strange is that the Osteocare i am getting here,it's pack is different from what is shown on site,and even the formulation isn't same,On site it says it contains Manganese,Copper,Selenium and Boron too,but the pack i got says Calcium,Magnesium,Zinc and Vitamin D only?Any thoughts?

Well , after reading this checked my OsteoCare tablet's packagin and i found that is Imported by a Local Medicine Importer Company named

Marketed By
" Acti Health Food
Paramount of Science And Nature
Karachi - Pakistan
E-Mail: actihealtfood@yahoo.com

i think acti health are the importer of this medicine ,as ICI was the importer of Ferriprox soo ICI changed the packing and gave their Symbol/logo on the FErriprox's packing. if you have any Ferriprox's packaging you can seee that .. soo i think the product is same but the importer gave their Trademark to osteocare , as they are importer and seller of Osteocare in Pakistan... i hope i make the sense ...

i m using this one osteocare 30 tabs in a pack , and vitamins and mineral details are same as mentioned here and on the packaing f my osteocare tablets .... here are the details. ..

http://www.vitabiotics.com/addtocart.aspx?ID=16
Quote
Osteocare Original 30 Tabs
A formula to help maintain healthy bones, OsteocareĀ® Advanced is Britainā€™s most popular calcium supplement, with the exact recommended daily allowance of 800mg calcium and 300mg magnesium plus vitamin D and zinc to protect bones.

Best Regards
Take Care
Umair
« Last Edit: January 27, 2009, 12:32:48 PM by nice friend »
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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Kathy11

Re: My new born baby has possible Thal major
« Reply #39 on: January 26, 2009, 10:32:39 PM »
Hi Umair,
The Positive from your "annoyance""   :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl makes us happy because it indicate, to us, that you are full of life and kicking :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl

So you see even those little annoyance we like, we need your sense of humour, You are the best if I had to grade  you :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl,

Continue to do the same we are here to annoy each other :wink :wink
Kathy

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Offline Sharmin

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Re: My new born baby has possible Thal major
« Reply #40 on: January 26, 2009, 11:17:20 PM »
Quote
yeah in my presence any out sider annoy you people i cant tolerate it , and i will never let it happen ( its my job only  ) ...

We wouldn't allow an outsider to annoy us Umair - you must keep up the good job that you are doing bro :)

Imagine how much energy you will have to annoy us when your ferritin is below 1000!!  I cannot wait to find out  :wink

Sharmin
Sharmin

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Offline Zaini

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Re: My new born baby has possible Thal major
« Reply #41 on: January 27, 2009, 03:05:34 AM »
Umair,

http://www.vitabiotics.com/osteocare/osteocare_tab_formula.aspx?ID=16&sm=9

If you look at this page,the formulation contains Manganese,Selenium,Boron and Copper too,which aren't mention on our pack.

Zaini.
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Offline nice friend

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Re: My new born baby has possible Thal major
« Reply #42 on: January 27, 2009, 12:46:43 PM »
KAthy and Sharmin ,
i assure you people that i will never quit to my job of annoying you people ... 
Kathy Thanx for the compliment that , and never think that i will left the "Feeble Heart" to go and stay safe to my junk posts :grin ( Feeble heart you said this somewhere in a thread )...  Sharimn yeah , when my Fe become's to lower than 1000 i will b more energatic and when i got more energy i will be able to post more messages and wheni will b able to post more message  then its mean that more junk post , when more junk posts then its mean hahahahahahahaha you know well ...... yeah you're right .......

@ Zaini
i have checked the link you provided , the link you mentioned is to OsteoCare Chewable , and the link that i posted was to OsteoCare Tables ( 30 Tablets pack ) ... there could b a difference between the formulation of OsteoCare Chewable and Osteocare orginal ( 30 Tablets pack ) ...
please make sure which one you are giving to  LiTtle Z ....  then please send that here ,  i also want to take a deep look over it ..i love to read all the information abt the mediicne before starting any medicine ,,,,....


Best Regards
Take Care
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

*

Offline Zaini

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Re: My new born baby has possible Thal major
« Reply #43 on: January 27, 2009, 12:51:27 PM »
No Umair,

The link i posted is not of Osteocare chewable,it's of Osteocare tabs,Although chewables and tabs have the same formulation,so it doesn't matter.

Zaini.
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Offline nice friend

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Re: My new born baby has possible Thal major
« Reply #44 on: January 27, 2009, 08:23:52 PM »
Hi Zaini ,
yeah , you are right . Chewable and tablets both has the same formula .
it is the Link that you mentioned :
http://www.vitabiotics.com/osteocare/osteocare_tab_formula.aspx?ID=16&sm=9

and it is about wat i was talking about , i mentioned the wrong link in my second last post i wanted to mention this one :
http://www.vitabiotics.com/osteocare/osteocare_tab_formula.aspx?ID=16&sm=21

you're right that formula is same , and o the site they mentioned about Calcium, Vit-D3, Magnesium, Zinc, Manganese, Selenium, Copper And Boron .

but on the pack that we are buying , Last 4 minerals hasn't mentioned .. i don't know if it corelate to the issue we are having discussion on but i found on the packing box of my tablets just below the " Nutritional Information " ,.. here is wat i found :
Quote
Energy, Protein, Fat, and Carbohydrate Content Negligible

(Unfortunately/forutnately wat may i say this) when i was searching on the Vitabiotics's site i came acroos onething , here it is :
Quote
    Home > Retail Outlets > Worldwide UK I Worldwide 
   

 
Country: Pakistan 
Please note, if a particular product is not available in your country,
it can be conveniently purchased from our website. Click to shop online

 

 Products Sold
Visionace 
 
yup its mean they only supplie's " Visionace " ( one of vitabiotics's product) tto Pakistan . .ou may check the link :
http://www.vitabiotics.com/findworldstore.aspx?country=Pakistan

i dont if they haven't updated their site or pakistani retailers won't to list up their pharmacy name there on Vitabiotic's site .... i dont know wat is the realy metter is .. it is possible that Pakistani import's the other products of Vitabiotic but a big no# of business community is not very are not computer sawy so they dont know to add their names and the products that they import's in the list ...... you may see in my previos post there is an E-mail adress that is made on Yahoo . i think big companies that importe's anything, should have their own domain name and their very own E-mail adress like : info@actihealthfood.com instead of actihealtfood@yahoo.com ( which they mentioned on below there symbol on the box of Osteocare tablets that i have ) ...

Wat do you say ?? m i right  ?? or i m behaving like over confidence ...  or i said something more than need ???.... i m waitng for repsonse ....

Take care
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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