Hi and salam to all

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Offline mamaammar

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Hi and salam to all
« on: February 16, 2011, 09:34:06 PM »
Hi and salam to all :)

I'm from Perlis, Malaysia. I have thallasemia minor same goes with my hubby.. with two beautiful gift from god.. 3+ years old boy name Ammar Adha and 7 months baby gurl name Ayu Amirah. Ammar is suspected to be thals too as his hb read 7.2 from the fbc test and he's becoming more pale everyday, easily irritable, very hard eater, quite skinny just 12.5 kilos but very active and so talkative little boy. We are waiting for the blood result on this 9 of March *hopefully..  and for my bb Ayu Amirah she have to wait until her 1st birthday to do the blood test.

From this forum i found many answer for my overcrowded mind with Thallassemia. I want to be +tive toward this life issue if my children have to go for any treatment if they have to but then i also want my children to overcome their low hb level by natural way means no drug n no transfusion. Since being just a guest and now a member *thanks to Andy, i've read many treads and postings from 2006 to present. Thank you all.. You all did calm and help me to understand Thallassemia better as i'm sooo sooooo stressed lately with this matter.

As for now... I've started my Ammar with goats milk (Hi Goat) wheatgrass jus (Zhullian wheatgrass jus) , vitamin c, folic acid , minerals supplement (trace minerals), multivitamin with no iron, avoid junk foods and low iron diet and now with 'Madulina' sureco too. (from Joyce posting). Ammar skin looks pale and very little pink  on his palm and feet and sometimes yellowish but amazingly during 3 days he take Madulina one teaspoon with 200ml cold water ( sweet taste like honey) 2x a day i can see my Ammar more pink on his skin n he eat more than usual.

Pls all.. please advise me if i'm too much with all natural supplement to my Ammar. Although the blood result is not yet come..I'm so scared if my Ammar has to go for transfusions and if his hb getting lower n lower and im really sad to see he's crying during the blood test.  :(

feel very glad and very thankful to be accepted as member of Thalassemiapatientandfriends.

Thank you Lisa,
Thank you Andy,
Thank you Danielle,
Thank you Sharmin,
Thank you Zaini,
Thank you Maha,
Thank you Sajid,
Thank you Al sham,
Thank you Joyce,

and

Thank you all..
 :hugfriend

Life is not just a bowl of cherries.....

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Offline Andy Battaglia

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Re: Hi and salam to all
« Reply #1 on: February 17, 2011, 01:17:54 AM »
Hi mamaammar,

It sounds like Ammar is thal intermedia. If he was a major, he would be transfusing at a much younger age. The supplements are all good but make sure the dose of vitamin C isn't more than 100 mg daily at this age, because it does help to increase the amount of iron he absorbs from foods, and this should be avoided. I would suggest 100 IU natural vitamin E also. If his Hb doesn't improve, you will be faced with two options. One is transfusion. The way you describe him, I am concerned that his growth and development will be affected by his low hemoglobin level. He needs a higher Hb than he has now. The other option is to try hydroxyurea to see if this can boost his Hb enough to avoid transfusions. Talk to your doctor about this possibility. Even though it involves the use of a drug, I feel it should be explored before transfusing because transfusions should always be a final choice. His hemoglobin level can't be allowed to continue to drop, so some action will have to be taken soon. Once the child is pale and loses energy, there is really no choice. It is a critical age for growth and you don't want it stunted by lack of blood. I would recommend hydroxyurea if possible. There is a new drug that will be approved in the coming years that works better than hydroxyurea and should have fewer side effects, too. Once this drug is approved, it will make it much easier for intermedia thals, as it will raise Hb up to thal minor level in intermedias. Let us know if you do choose the hydroxyurea option, because there are two more supplements to add once that starts. I would also suggest continuing the supplements he is now taking, as long as he tolerates them well.
Andy

All we are saying is give thals a chance.

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Offline Zaini

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Re: Hi and salam to all
« Reply #2 on: February 17, 2011, 03:30:49 AM »
Salaam MamaAmmar ,

:welcomewagon on the forum,i am really glad that this forum is helping you,As Andy said Ammar seems to be an intermedia,if his hb raises in response to natural remedies and hydroxyurea,he can avoid transfusions.Good luck  :hugfriend

Zaini.
^*^Xaini^*^

Re: Hi and salam to all
« Reply #3 on: February 17, 2011, 06:56:39 AM »
Asa MamaAmmar,
best of luck with your babies, i hope they are always healthy and happy!!!

Andy, are you talking about HQK-1001 coming into the markets this year?

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Offline maha

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Re: Hi and salam to all
« Reply #4 on: February 17, 2011, 08:49:35 AM »
Salaam MamaAmmar,
Was Ammar's hb tested when he was sick? I can understand how difficult the wait is for the blood results. All the very best for your little ones. And in the meantime take good care of yourself too.

maha



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Offline Sharmin

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Re: Hi and salam to all
« Reply #5 on: February 17, 2011, 02:16:57 PM »
Welcome MammaAmar,

We are glad to have you here.  Please keep us posted.

Sharmin
Sharmin

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Offline Andy Battaglia

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Re: Hi and salam to all
« Reply #6 on: February 17, 2011, 05:16:26 PM »
Love and Payers,

Yes, I am talking about HQK-1001, although I don't think we will see approval that quickly. It takes time once stage 3 trials are completed before approval can be won, so it's probably a bit longer than this year before we will see it. I do think that this will be one of the first new therapies for thal that we will see approved.
Andy

All we are saying is give thals a chance.

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Offline mamaammar

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Re: Hi and salam to all
« Reply #7 on: February 19, 2011, 09:48:17 AM »
Hi everybody... :)

Thank you for welcoming me to this family.. im so relief when Andy says it is okay to give my Ammar all the natural supplement as long he can tolerate with it but of course it is not easy for me to make sure he takes the supplement everyday  :rolleyes. I wiil get the Vit E as soon i can go to town and hope he will gain some weight and his Hb will read higher than 7.2 as when the blood test was taken, my Ammar just recover from fever and cough.

Today Ammar is more energetic and active as usual but not that pink enuf on his palm n skin. may be the wheatgrass gave him more energy.  How high Hb to make the skin looks pink and healthy? Why he still don't like to eat his meal although i give him lysin n other multivitamin since he turn 1?



Life is not just a bowl of cherries.....

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Offline mummy_timmy

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Re: Hi and salam to all
« Reply #8 on: November 29, 2011, 07:43:18 AM »
Hai mama ammar,

i know i late for me to reply to this forum but i wish to share with Andy on his suggestion to use hydroxyurea . We also from Malaysia and my son received his treatment at PPUM.I have talk with our Dr that is seem that hydroxyurea is not one of the method for thals treatment in Malaysia.Our Dr have no experience handling hydroxyurea.

my son have received his 1st blood tranfusion when he is 9 month.We're hope for Malaysia hospital to consider hydroxyurea.


 

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