Singapore Scientific Programme Schedule

Castor oil is best for lashes,  i've used it and seen the difference,i am just being lazy now a days to take care of myself 

Zaini.

Hi Guys

Castor oil does work atleast tht is what I have heard in home remedies. Maako u hv cute lashes.

Btw, I was trying to upload some pics and I was not able to, cos it is my first time. Any advice please , it gets stuck at add a picture, I add it and then it doesnt change or say pic saved. Dunno wht is wrong, is there a limit to a pic size.

Let me know so I can show u some cute pics.

Hi Puja,

Yes, there is a size limit. The best thing to do is install a free program called Pixresizer and use it to re-size the pics. It's easy to use and makes it easier to upload pics or send them in emails. See Danielle's post at http://www.thalassemiapatientsandfriends.com/index.php?topic=689.msg5312#msg5312

Dear Andy,

It was a great conference in Singapore and got some updates as well....

I want all the inforamtion which was talked at the conference so do u know any site where all these will upload....

Is there any talked about the cure? Gene Therapy?

Regards
Ashutosh on behalf of My Son PARIN

HAY EVERYONE MISS U GUYS
i told dr today in reagrds to many things like whaet grass wich i stared aysam on osata and cuncom and fish oil
they went mad at me they said no no no u cannout just give him hearbal stuff i am now so confussed plz somene help me
why they said this they said he has thal majour u just dont give him herbal stuff and he is on exjade
pls somene i need to know am i doing the wrong thing i am now so worried am i killing him myslef thsi si how they made me feel
plz tell me 
cuncom
what is it for why we use it how much and how to give him ?
osata
what is it for why we use it  how much and how to give him ?


fish oil

what is it for why we use it how much and how to give him ?


wheat grass



what is for why we use it how much and how to give him?
also vitamine c d and b i ask for a script becuse i heard at the confrnce it will help they yelled at me why ?
i dont knwo they wont allow me to get it

i cant understand why they are doing this to me i am takeing aysam to lebaonon in feb 09  until now plz tell me what am i doing wrong what should i be doing plz so when the dr ask me why i am giveing him all this i have a reply to there answer into why and hwo much and what it dose side affects and everything you know what i meen ? plz anyone

Dear Mariam,

I am sorry i don't know about concum or osata,but you are doing nothing wrong giving him wheat grass,keep giving him wheat grass,it is known to increase energy levels,my daughter is also taking it.

For vitamins ,buy any multivitamin for kids which does not contain any iron and not a very big amount of Vitamin C.He is so small so i don't think he'd be able to swallow tabs,IP6 is the best antioxidant and a natural chelator.May i ask how frequent are his transfusions.

He is so cute and cuddly that i just wanna hug him  give him a big kiss from me.  And don't worry we are here to help you and support you.

Zaini.

Mariam,

Your doctors are unbelievably clueless. You were at the medical talks and I also introduced you to two of the top thal doctors in the world, and you heard them talk about the importance of supplements. Folic acid, vitamins D & E, B Complex and L-carnitine were all stressed by these doctors. I do not understand how your doctor could have missed all this. All the things you mention are natural products and don't need a doctor's approval to use. Fish oil is made from fish. Wheatgrass is simply a sprouted grain of wheat. FPP is made from papaya and is a pure organically grown product that has shown an incredible ability to enhance the levels of vitamins and minerals in the body and is being studied for its affect in many conditions. These are all natural products and not medicines. They are safe to take and should not require a doctor's approval. Sometimes it's best to just stay quiet and use the things that can help your child. Some doctors think they know everything but when they claim to have more knowledge than the top specialists in the world, it is simply arrogance and will not help your child. If you are able to take your son to see Dr Taher in Lebanon, you will find much more acceptance of the role that supplements can play. For the time being, everything you mentioned is safe and in fact, none of it is even classified as herbal.

Don't let the doctors confuse you. Many doctors resent patient involvement in their own care or care of their children and their arrogance can sometimes be detrimental to patients. At Singapore, we were able to meet doctors with great compassion, who will not allow their egos to rule. If only all doctors could be as caring as these very special people.

hi Mariam

Supplements and herbal stuff can be given with transfusions and chelation.

Zaini -  It is Cucurmin(which mariam has referred as cuncom I guess) - it is turmuric(haldi). Antioxidant .


Osata is fermented papaya preparation, www.ori-japan.com or you can mail stephane@fpp-asiapacific.com

Doctors talked very highly of this product.

It is absloutely beneficial for him to be on the supplements as well as his regular treatement.

  thnx guys you are all the best help eva i love you all and im sure my two year old would write t\he same if he was old enough lol 
ANDY BAD NEWS the packAGE I SENT WAS SENT BACK TO ME 
i am so sorry the customs have opend it and said i am not allowed to semd prescribed tablets or any medication i was in bit of trouble but i never new
i am going to see what other way i can get them to you lol they took $60 and said no return money 
at least we know now oh andy i sent you a aemail plz  if you can read it and reply to me if u havent recived it let me know oh yes i am not listening to dr here anymore you wanna know i am listening to you guys i trust u guys more 
to all and yes i gavemy son kisses and hugsy from all u guys
 

DATE 14/08/08     
                                                               DATES 13/10/08                               LIVER FUNTION TEST
 
bilirum total    4                                          5
 
bilurum (conjugated)    2                                    2
 
aspartate        56 H                                         80 H
 
                                       
 
alanine txaminase   [bgcolor=#eb0000]58 [/bgcolor] H                                            134
 
gamma-gluttxferase  [bgcolor=#c40000]14                                                 [/bgcolor] 16
 
 
alkline phosphatase   [bgcolor=#ff0000]155                                   



          [/bgcolor] 165[/left]
[bgcolor=#0000ff]YOU CAN SEE DATES ANDY IN TWO  MONTHS BIG DIFFRENCE
I HAVE WROTEN DATES AND THE OTHER SET OF NUBERS ARE IN LINE WITHE Test
 DATE SHOWN ON TOP AND THEY TELL ME NPO BIG DIFFRENCE MMM? ALANINE TXAMINASE BIG DIFFRENCE BIG  andy me dear you are my life line as this
time as they are being not honest or i am just to panicy
they tell me they are a little high mmmmmmmmmmmmm i dont see this

 [/bgcolor] 

DATE 14/08/08     COMPARE THESE DATES
                                                     DATES 13/10/08                               LIVER FUNTION TEST
 
bilirum total    4                                  5
 
bilurum (conjugated)    2                       2
 
aspartate       56 H                             80 H
 
                                       
 
alanine txaminase   58 H                             134
 
gamma-gluttxferase  14                           16
 
 
alkline phosphatase   155                        165
 

 

Hi Mariam (aysam)

I am sorry dear for the results, actually i have no idea what they are about and i am sure Andy will help. But i just want to know why is the bilirubin that high when aysam transfuses every 3 weeks?

Did you increase the dose of exjade to go with his weight as Dr. El Beshalawy had told you i the conference??

manal

MANAL whats biliram ? meen

Hi Mariam

Bilirubin is generally high in thal kids.  But we need to double check the range. What did the doctors say?

Please dont colour it blue.. I am unable to read it then.

Luv

Puja

puja
im sorry i havent been able to talk on msms evertime i say hello they cut me off i  dont understand why
its the the biruim im worried about 
its the liver