Discussion Forums > Working Towards a Cure
hydroxy urea in transfused patients
Syaida Lee:
Can anyone suggest where I can do the xmn polymorphism test? The last I checked with my son's doctor that it is not available in Singapore. I was told by her the nearest could be Thailand for me. Can anyone link me to a hospital or doctor contact so I can air flown Adel's blood overseas from Singapore/Malaysia?
I need to have a back-up plan should we need to start HU. Thanks in advance.
pleasance:
hiiii all ,
Today after reading all the posts on this topic i was very disturbed thinking that some of u are so lucky that atleast ur doctors guide u in using l-carnitine/hydroxyurea/magnesium.....but here in my case m hearing all these names for the first time even after being wth thal from past 7 years
I know that the doctors will never be proactive and let u knpowbut here i had asked ma doctor about this and he told me not to give attention to all these things and he is a renowed haemat..........its been high time that i think we should change the dr who also is concerned wth the patients and not jst wth the earnings........m really dissapointed and angry at the same trime as even we are not finanacially tht good that we could meet wth all the expenses but atleast if we know that there are ways to help our child may be we can atleast try for that and if possible
can anyone pls suggest me good haemat in mumbai........................pls i really need one for my daughter m literally in tears ...some of u may think that i m so negative and rude in my remarks but the kind of approach i ve got is horrible just cant say nything else here...............so pls help me out
Manal:
Hi pleasance
I really can understand what you feel and i definetly agree that this is annoying to any parent. But unfortunatly not all doctors are fully aware of the management of thal and to some extent in chronic disease parents have to search and search for any thing that can be of a benefit. But the good thing is that it is never too late :biggrin
Definetly you will see anyof our friends who live in mumbai will guide you to where to go
Wish you all the luck
manal
Sharmin:
Dear Pleasance,
I can understand your pain and frustration. To be honest, most doctors, even here in Canada are not aware of these things. We also had to research these things on our own in order to give them to our son. My son was 8 or 9 when we began giving him these supplements. To be honest, thalpal is where I found out about most of them. Were it not for Andy and our great friends here I don't know where we would be now. 4 years ago when I came to this site my son's antibodies were out of control, we were not on any of these supplements and his iron levels were beginning to increase.
With Andy's advice, we took him to Oakland, had him assessed and began treating his antibodies and reducing his iron levels. Thankfully, his iron is now well below 1000 and he is on many different supplements. You have come to the right place, we will all help you here and we will make sure your daughter does well regardless of what your doctor is educated about.
Don't worry Manit, as Manal has said - it's not too late. Your little girl is precious to all of us - and we are here to support you.
Sharmin
pleasance:
i thank all of u here m so lucky to be a prt of this site and if there is any one in mumbai who is on all these supplements pls lemme know tht as tht wld be of gr8 help
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