1st Pan-Middle Eastern Conference on Haemoglobinopathies ..May 2009, Syria

I am sorry Mariam that he is not replying but i hope he will soon. I know how frustrating this is .
Yesterday, i saw my hematologist and i told her about Aysam's iron levels and she also advised the IV desferal and added that it will cause a significant decrease in his ferritin.

But again, you can not do this in Australia as you will need a prescription 

manal

manal so she agrees also iv desfral
what will be the result if he dosnt have it and his iron levels dont come down soon
im so confussed also sory can i ask is hs a doctor or professer?

Mariam the IV desferal is considered an aiding factor in order to see a quick drop of ferritin, but not a continous treatment and also don't forget that he has not reached his targeted dose of exjade yet which is the chelating dose. The doctor is Professor Amal El-Beshlawy Prof. of Pediatric Hematology Cairo University

manal

Mariam, does Aysam's doctor refuse to give your son desferal?
I know how frustrating this is. I keep crossing my fingers for a good result!

no she dosnt refuse
she cant give him desfral ill show you a picture why but she refuse to put the dose up for exjade and i think she dosnt know what she is doing i think she is afraid

Mariam,

I also agree that 24hr IV desferal may bring down our little Aysam's iron levels quickly.  Please see if your doctor agrees to do so.  My son used to have IV desferal with each transfusions when he was younger and he did well with it. 

Take care and please keep us posted,

Sharmin

hi all how everyone ?
aysam is doing fine just want to ask he did some test for the zinc and i was told it was low ?
wich meen ?

if someone can telll me what to give him his liver test also playing up and his iron is 3000 its been so high for so long his face always looks dark he hasnt any couler anymore even when he puts blood he seems to always be dark in couler ?
i am going oversease in two weeks but i cannot take him his papper work to become lebenisse i spoke to proffecser taher and he rufesed to take him as a paitent if he hasnt become a citizen and i have some problem with his pappers  i am going to see if i can fix them i will go to the confrencein syria also

I am so sorry to hear that you can only get (the right) medical help when you got the right papers. 
I hope the paper work can be fixed soon. I wish you also a good trip & keep us update, please.

 

Dore

Hi Sis,
I wish you best of  luck in getting good medical treatment for Aysam ,

Lots of Good Wishes
Best Regards
Take Care
Umair

Mariam,

I s Aysam taking IP6,both me and Sharmin when started IP6 noticed a great change in our kid's skin color.And is he taking any Zinc supplements?if he is not ,start one right away.

I hope your paper work problem will be solved soon.

Zaini.

Mariam,

Aysam is still not receiving adequate chelation and as long as he continues to get darker, you know he is not having enough iron removed. How much Exjade is he currently taking?

zinc what dose it do what dose it even meen
and all these medicines what are they i never
ever heard of them he is on 375 exjade dailly
i give him everyday at 500am with apple juice so what am i doing wrong ?
he weighs 14 kilos
please tell me help me yes it is sad i told proffecer i am a citizen and so is aysam he was very meen to me about it even i told him i will oay for what ever needs done he also said even if u pay he isnt allowed in the center as he isnt a citizen and i beged he said look mariam what you want us tp do i cryed on the phone asked for his advise he said that he cannot giveme any advise on the phone as he will not be responsible for it as he dosnt know the paitent yes this is what he said he also said stopemailing me and calling when u fix the pappers you bring him and he didnt even say bye just hang up on my face i felt so low and lost this is life what can i do
i dont always email him i did maybe 4 times and i called twice from october last year thats all so why he is he saying this i dont know ?

Hi Mariam ,
Have some courage sis , everything will be O.K ... dont loose your heart , gather your courage and Patience and make doctor's words your strenghth and then try to fix the Papper work ... have faith in your self , you can do it ,

You have powers you never dreamed of. You can do things you never thought you could do. There are no limitations in what you can do except the limitations of your own mind." - Darwin P. Kingsley

 
Do remember this quote, its one of my favroute quotes, Have faith in your self you can do/fix anything that you never thought you could, you can fix this probleme as well...  and please never cry again okiey , just  think/approach any prbleme by saying " okiey i  will face it , i can do it "

http://www.ehow.com/about_4678519_what-does-zinc-do-body.html?ref=fuel&utm_source=yahoo&utm_medium=ssp&utm_campaign=yssp_art

What Does Zinc Do for the Body?
By Kent Ninomiya, eHow Editor
Zinc is very important to the human body. It is an essential trace element that is vital for growth and development. Zinc is instrumental in immune response, brain function and the ability to reproduce. There is also conflicting data suggesting that zinc supplements might be able to reduce symptoms of the common cold.

Function
Zinc is essential for the proper function of cellular metabolism. About 100 enzymes rely on zinc to help them catalyze vital chemical reactions. Zinc protects cell membranes from oxidative damage and stabilizes the structure of cell proteins. Zinc proteins bind to DNA and help the genes tell cells what to do. This includes telling certain cells to die, which is important for growth, gestation and disease prevention. Zinc also helps control the release of hormones and the transmission of nerve impulses.

Benefits
People can benefit from eating zinc-rich foods. These include red meat, poultry, crab, lobster, nuts, beans, milk, yogurt, cheese, whole grain bread and fortified breakfast cereal. The food with the most zinc is oysters--a serving of 6 oysters has 76.7 mg of zinc. The tolerable upper intake level for an adult is 40 mg of zinc, so it is advisable to eat no more than 3 oysters per day.

it was the short introduction of Zinc, i hope that , i answered .. did I

Best Regards
Take Care
Umair

Mariam,

IP6 is an antioxidant,i don't know if its available in Australia,Theodora will be able to help you in this aspect,or either you can buy them from www.puritan.com .They are in capsule form,you can open them and give the powder they contain to Aysam.

Zinc supplements are available in syrup and tabs both,ask your doctor to prescribe one for you.

What are Aysam's SGPT levels? According to his weight his dose of exjade should be 420 mg,but if SGPT levels are not going down,then you might have to weight a little bit.How frequently is he gettin g transfusions?

Zaini.

hi all as i told you today i had a feeling somethingwas rong he had transfusion two weeks ago now his hb is 9.7 and his liver function is high 280 why why why
what is happeing to my son my smart son who has the whole lifeachead of him he looks pale and yellowish
bilirum total what is the normal limit and i want to ask i need to know the truth his liver funcion test if always they go upand down would this damage the liver in the futer or becuse the liver is one week high next low nothing will happen as the iron asweel ? will it damage if also it plays up one week high next gone down a bit ? i need the truth

i do have faith 
but i want the truth