Difference

Manal,
i have been reading through nutrition corner, thats why i asked about supplements..
but why her doctor did not advise supplements?
should we start supplements without doc's advice?
Abbas

That is strange too for me Abbas, but you can discuss it again with the doctor

manal

Manal,
i m totally confused what to do...

Abbas

Abbas,

This is the usual behavior of doctors here,but which doctor are you talking about? Dr Javeria or any local doctor?

Zaini.

Abbas

I would advise to talk again with the doctor and show him/her some research. There are 5 important papers concerning L-carnitine for example and its effect on thalassemia

http://www.thalassemiapatientsandfriends.com/index.php?topic=892.0

Improvement of Cardiac Function in Thalassemia major Treated with L-Carnitine
http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ArtikelNr=76522&Ausgabe=229926&ProduktNr=223829

Assessment of Puberty in Relation to L-carnitine and Hormonal Replacement Therapy in {beta}-thalassemic Patients.
http://lib.bioinfo.pl/auth:El%20Beshlawy,A

Apoptosis in Thalassemia major Reduced by a Butyrate Derivative
http://content.karger.com/ProdukteDB/produkte.asp?Doi=87890


Diastolic Dysfunction and Pulmonary Hypertension in Sickle Cell Anemia: Is There a Role for L-Carnitine Treatment?http://content.karger.com/ProdukteDB/produkte.asp?Doi=89472

Pulmonary hypertension in beta-thalassemia major and the role of L-carnitine therapy.
http://www.ncbi.nlm.nih.gov/pubmed/19065439?dopt=Abstract

So lets try first to show these studies to your doctor before deciding to take them on your own though i don't think there would be no harm

manal

hi,

sorry, i had gone to home for Moharram holidays!!!!
zaini, i m talking about dr. javeria....
what to do now???

Abbas

AOA Abbas,
Dont worry dear , its not her (Dr.Jovaria Mannan) fault ... the supplement we talked abt here mostly are not available in our Country .. but , the supplement those r available here in our country and those r imported onez , doctors dont know abt them , as for those medicines there r NO Pharmaceutical persons or medical wrap to tell doctors abt those medicine .... when i was prescripted for calcium n Vit-D  Pharmacy man gave me simple calcium + vit-D  supplement which was much cheaper but only has calcium n Vit-D in that in much lower dose ... but , when i got  to know Abt Osteocare and asked him abt its availability , he said "yes , its available " i bought one and in my next visit to my Doctor i showed her that and asked her abt  that , she saw and said "where did u found it ? "  she said its better than anyother supplement so u may start it by now .... so , wat i want to explain is, its not our doctor's fault , there r NO medical wrapers for imported medicine so how can our doctors get knowing these supplements ... i never hesitate to ask abt any supplement to my doctor ... doctor cant visit Pharmacies to have a hawk eye on these suplements .. so , if u think that a supplement is good for Najaf , then take a packaging of that supplement and discus abt that to doctor .. if that wud b good doctor will sugest her that ...

C ya Dost .. i wrote alot :D ....

Best Regards
Take Care
Umair

Abbas,

Yes doctors might be unaware of supplements not available in our country,but i won't say that its not their fault,they should be investigating more and more about how to give proper and advanced care to their patients,but sorry to say,they don't,i started my daughter on quite a few supplements which were not prescribed by her doctor,i learned about them on the forum,i asked question if they had any side effects,and then i tried them,coz supplements are necessary contrary to what doctor say or think.

I am not asking you to do what i did,but use your own common sense and judgement,you can also do some tests to check if Najaf is deficient in any particular mineral or vitamin.

Zaini.

hi,
i try to search multivitamins and minerals available here, then Najaf will be started with these supplements at low doses........
on my next visit to doctor i will take the approval......

Abbas

they (docs) cant go and check the each n every availale medicine in Medical store's shelf .... but, onetihing that is possible is , importer of those medicine ccan creat a medical wrap for advertisement of their imported medicine to aware doctors about the available more effective medicine  , and to increase heir sales .... it will bring more competition in medicine market of our country n hopefully then our local producer will produce more effective medicine ... i thin , its not doctor's fault or less doctor's fault n more our n importer's fault ... i  think we people have to tell doctor if we can find more quaility product in medical store ... as i said bfore, i never hesitated to show any supplement ot my doc bfore starting that ....

Umair

Umair,
i will search for such supplements and then show these to doctor,

Abbas

they (docs) cant go and check the each n every availale medicine in Medical store's shelf .... but, onetihing that is possible is , importer of those medicine ccan creat a medical wrap for advertisement of their imported medicine to aware doctors about the available more effective medicine  , and to increase heir sales .... it will bring more competition in medicine market of our country n hopefully then our local producer will produce more effective medicine ... i thin , its not doctor's fault or less doctor's fault n more our n importer's fault ... i  think we people have to tell doctor if we can find more quaility product in medical store ... as i said bfore, i never hesitated to show any supplement ot my doc bfore starting that ....

Umair

Yeah they can't go to medical store and check every shelf but whats internet for ??

Zaini.

hi,

here is problelm.....
on last thursday Najaf got transfused from Ali Zaib (where umair gets transfusions) because her hb was around 5, and amazingly yesterday again it was 5, Najaf will be transfused tomorrow again,
it means 2 transfusion within 10 days....meanwhile najaf has not been eating anything, anything she is given she refuses to eat it, if she takes milk she vomits it immediately......
did any of u did 2 transfusions in 10 days......
i m too much worried.....

Abbas

Abbas,


transfusions don't go by days - they go by hb, which means a transfusion is scheduled according to the Hb. Two transfusions in 10 days is not something unsual. However, are you sure the second HB count was correct? There are always possibilities of mistakes. The only thing you should check is if Najaf is sick with something, as you have said that she does not eat anything and vomits -- she may have a cold or something. Check that out.

Lena.

Abbas,

Was Najaf sick before getting the transfusion? How was she eating before she took blood?

There are at least a couple explanations. She may have been ill when she got the transfusion or became ill since. This might cause a drop in Hb. Another possibility is an antibody reaction which made her sick and also caused the Hb drop.

Blood can be transported for testing but you will need the cooperation of those taking the sample. Blood is stored with a preservative (EDTA) and kept at low temperature (2-8° C).

Also, make sure you know her blood type and make sure the blood she is given is always the blood intended for her.