Is Desirox give with milk or not ?

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Is Desirox give with milk or not ?
« on: January 25, 2015, 12:19:59 PM »
Dear friends my baby is only 14 month and he need blood transfusion after 21 days . The Ist transfusion only when he was 6 month age.Now His ferritin level is 1100 so doctor advice me  desirox tablet but its very difficult so I give the desirox tablet mixed with milk so I will ask its safe with milk or not.
pls help

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Offline Himanshu Kumar

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Re: Is Desirox give with milk or not ?
« Reply #1 on: January 25, 2015, 02:46:47 PM »
the dose should be 40 mg per kg of body weight. you can mix it with juice instead of milk. how much is his weight.
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 Andy Battaglia

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Re: Is Desirox give with milk or not ?
« Reply #2 on: January 25, 2015, 04:37:59 PM »
14 months is probably too early to begin chelation. I would not advise starting at such a young age. When the drug is started, it can be given with most foods, including milk.

And a dose of 40 mg/kg is only advised when iron is out of control.
Andy

All we are saying is give thals a chance.

Re: Is Desirox give with milk or not ?
« Reply #3 on: January 25, 2015, 05:09:35 PM »
thx Himanshu and andy
My baby weight is
 9 kg.

Re: Is Desirox give with milk or not ?
« Reply #4 on: January 25, 2015, 05:45:21 PM »
Dear sir  some questions in my mind.I want BMT of my baby as soon as possible kindly help

1) I want to take the HLA test of my baby . But the cost of these test are are so high in punjab, India. 16000 per test
2) parents matching HLA  possibilty is very less where to find the donor for BMT.
3) Dr. advise one more baby for donor but near my city one person take all the test for 2nd baby during pregnancy and Dr. Take all the test during 11 week of pregnancy and Tell this baby is normal but he also effected with major thalassemia.

4) donor  is find out on the internet is it possible pls share the link .
5) Which test tell which type of thalassemia?
6) I take Mutation Analysis Test the Dr. Tell  I think that is major thalassemia and also if any patients need regular blood transfusion so it is a major thalassemia.

Pls tell what is right or what is wrong.


Re: Is Desirox give with milk or not ?
« Reply #5 on: January 26, 2015, 12:23:46 AM »
Knowledge is power. Please note BMT is risky and often comes with life long side effects. You can register your baby with HLA international registry and the database will keep checking for a match (talk to your doctor about registration). It is very rare to find HLA match outside the family.

Do not trust every story you hear about thal. There is no guarantee whatsoever, that second child will be thal free and HLA match for your child. Ask your doctor which test he has run so far to confirm the thal major. As you mentioned your child needs blood transfusion every 21 days, it looks like that doctors have confirmed thalassemia major.

Any Indian member living in Punjab, please try to call Mr. Gurpreet and guide him to a proper thal care center in his area.


Regards.

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Offline jay

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Re: Is Desirox give with milk or not ?
« Reply #6 on: January 28, 2015, 08:17:26 AM »
Dear Gurpreet, as suggested by Canadian_family knowledge is power. belive me as you rightly said cost of HLA typing is unessesory high and to find a way out of it i learned how to do DNA test myself (i dont do it for others). If you want i will call you, i speak english, hindi, marathi and understand punjabi, gujarati and bengali my 3.5 yr boy is thal. But any way i will suggest to stick with this forum for more knowledge.

Re: Is Desirox give with milk or not ?
« Reply #7 on: January 29, 2015, 05:10:33 AM »
Dear Jay,
Kindly give me your Number to discuss about thalassemia.

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Offline jay

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Re: Is Desirox give with milk or not ?
« Reply #8 on: January 29, 2015, 07:26:30 AM »
+91 9637294778

 

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