newie from sydney

hi all this is vic from sydney australia. have discovered your site and have been drawn to the stories and people.  this site is of interest due to my son who is on monthly blood transfusions he is 4 yrs oldstarted at 3. ferritin levels 1300 and will be starting iron chelation shortly. i am petrified.  our story is a liitle diff. i am thal minor - always knew so had my husband tested before we got married. guess what? no thal trait- great we think.  get married have a baby.  baby very sick most of time.  turns out my husband has sickle cell trait.  so i know this is not a sickle cell website- but i have hooked up with the thal society here in sydney as we dont have a sickle society.  i'm really interested in the transfusions, ferritin levels, oral chelators as treatment for my son is as same as thal majors.

Dear vic
              the sickle cell almost same thalas. major regard the transfusion and iron chelator,,and even you keep your child with transfusion all his live or you have a second chioce who is BMT if you he have brother or sister match with him ..or in italy they start BMT from the mother to her child even if she not matching any mother match with her child 50% they do it now in italy and there is good succesful percent you can contact Dr paola polch ppolchi@hotmail.com
               any way we are here to help as much we can because we
                     ONE FOR ALL AND ALL FOR ONE 
                                 GOD BLESS YOU
                                       KHALIFA
                              STATE OF KUWAIT
   

Hi Vic welcome here

I'm sorry for your sons... I'm ungry with this kind of doct that wrong the tal test...
In this forum I have seen other people from sydney or near....

thanks khalifa we spoke yo an oncologist about the BMT as i was pregnant with my second son when my first borm was diagnosed at the age of 2 and he said to hold off on the BMT due to the risks involved.  my heart bleeds for what lays ahead for my son.  once a month transfusions are bad enough but within the next month we will start iron chelation and i dont know how i will put on a brave face and put a needle in him every night.  has your son stopped transfusions because of the BMT?

Hi Vic
Welcome to our forum I do hope you get the information you need and make some friends along the way.
You will need a lot of support because it s not an easy road.
I feel sad and angry ,I feel the doctor has failed you in their duty of care ,because of their negligence and the lack of information, they've allowed you and your husband to conceive achild  with thal major.It would have been nice to have been informed then you would have had  the choice.

I am not surprise the doctor here in Perth/ australia, just dont know about thal or sickle cells for that  matter.I have thal minor and sickle cells traits(I'm 52yrs old)
I'm so ill and have given up dealing with the doctors, instead i'm making plan for my funeral because I feel that I will not get the care that I need to maintain my current health.
Yes  I've heard so many times people telling me doctors are trained and they knows best but in my case and in your case they dont know and has not helped me
My point is the medical professionals, especially the doctors need to be more accountable
God luck and may your child get the health care he require.
Kathy

 Dear vic
      Firstfull i never ever let any Dr decide what am going to do because before i do any thing i have to study it and make descusion with my wife and also some freind who envolved in the same problem .
       second: is your Dr who you ask him involved in the BMT? and did he know all the prosedure and all the possiblty of the succesful or fealure ? and the last question is did he descusse with you and explain to you everything      belife me vic on my experiance with my son for more than 10 years and all over the world i found TWO kind of Drs.. one of them they feel jeluse when they find the pearants understand everything so they start to fight with the pearants and also they think we are nosy PpL (just put our nose in any supgect) so these kind they want us to be unknoledge or to be like a cows who eat and drink and sleep that's all .
        second Drs they feel relax and also they thanks the GOD because there is some pearants undesr stand the setuation and what going on with there child . this kind of Drs is easy to deal with ..
 now am going to answer your questions a bout my son  Regard the first blood transfusion i still remember it as well as happened yesterday i don't blame you dear vic i was crying and asking my GOD to let me in his place ensted of him ... but you have to recognise if you don't transfer blood for him somthing wrong will happened so please and for GOD seek just put some brave on your heart ,,, i know it's too painfull for you and you hasspaned but it's your destiny  ..
      Regard the iron chelation  i still remember Dr.LAILA who she was the follow up Dr for my son how she tried to teach me how i use it (SHE WAS IN THE EARTH AND I THINK I WAS IN THE MOON) i had same situation you have it now even am as a pilot never had shacking in my hand even in bad weather flying BUT that day i was shacking from my head to my feet i remember i put it in my tomy first to find out if it's hurting me or no but i put it and the tears covering my eyes ..
      My son now almost one year stop blood transfusion and he don't need any transfusion because i made for him Prepheral Blood Stem Cells (PBSC) in italy june 2005 it's almost same procedured of BMT. any way it's his second transplant for my son the first one was 2003 with BMT from his sister so he got rejiction and the Dr decide to cansel and stop the the operation and let the boy go back as thalass.major a gain.. any way i didn't stop thinking to do the best thing to my son so i start to make a lot of reserch and alot of cuminication with many centers all over the world and spicially italy center who is guide by Prof.lecuralli and his lovely team ...2005 april we had an appointment with Dr.Paola polchi and we start talking a bout what we are going to do and the succesfull percentage and the fealure percentage so we done it ..
                exusse me vic  I would like to say somthing to the lovely team here
    THANKS GOD WHO GUIDE YOU FOR THE BEST TREATMENT AND THANK YOU
                              AM NOT GOING TO FORGET YOU
    Vic to let you know some kind of Drs all over the world i wiil tell you somthing happened to me when i was in italy ,,,One day i was seting in the reception desck in the hospital i found one man come to me and he ask me are you Mr khalifa from kuwait i replay yes and a lot of questions mark on my face he said OH that you who is the Dr in kuwait talk a bout you that you want to kill your boy  because she warn me to don't do the BMT for my son..  i freplay Ah that what she said so we will see if she is a Dr or that person who read the feuter.. 
         MY ADVICE TO YOU VIC DON'T STOP TO TALK TO THE DRs AND DON'T STOP TREAT YOUR CHILD AND PUT SOME BRAVE IN YOUR HEART BUT ALL OVER THAT DO WHAT DO YOU THING IS THE BEST FOR YOUR CHILD ..so in the feuter you don't have to blame your self ...
               my best regard to you and your child and all your familly
                                                       KHALIFA
                                                   state of kuwait
                                      ONE FOR ALL AND ALL FOR ONE     

Welcome to the site, Vic!  I'm so glad you found us! 

As you know, the treatment for Sickle Cell is very similar to Thal, besides the "pain crises" issue due to the sickled shape cells.  I'm sure you will gain lots of insight here, and make many friends in the interim. 

If I'm not mistaken, I believe we have a few other Sickle-Cell patients here.  You are all welcome here with us.

We are always here when you need us.   

Wecome Vic. 
I can understand your feelings quiet well.
Hope everything will go well. I want you to know that we are all here for you and please keep asking questions

Take care

Manal

to the site Vic!

I'm sure that you will benefit from this site as much as Thal. patients do.
Please feel free to ask any question and share your experiences with us.

Take care, Peace!

hi all, thanks for the feedback.  i feel like i have found people that understand.  when i get down sometimes people around me try and cheer me up and say it could be worse, he could have cancer, he could be paralysed ect and i know they mean well but unless you live with it people dont know what you have to endure.  my son christian is a beautiful 4 year old, so resilient, understands his disease puts up with the transfusions because he knows it stops the pain he endures.  i tell him that god chose him because he is special and many other children his age would not cope with what he goes through.  the up side is that he may not have to endure 30 years of chelation with a pump.  he will be the new generation of transfused patients that hopefully will only have memories of an iron chelator and that has happened because of all the education, advocating and hardship previuous thals have had to go through.  this education only means that my childs journey will be easier than those before him.

thanx
vic
 

hi vic,
welcome to this site,hope it will give you lots of advice and info what u need.I too am a thal major patient in sydney.
from sydneygirl

Hello Vic

Welcome to the family. I'm glad you hooked up with the thal society in Sydney because the girls within the socity are great. There is a book that you can get on Sickle Cell which is written for children to understand their condition. I will endevour to find the name of the book and post it here so you can get a hold of.

Also  your little one might be able to use the new iron chelation method of Exjade. Your doctor should be aware of it. Are you seeing Dr Linderman, if so speak to him about it and I am sure the little one can start on that instead of the infusion pump.

Miaki

Hello Vic,
     Welcome and good wishes to you and your son. This site is so good for morale and for getting positive energy. It has really helped me. You are doing a great job with your son, sounds like he is a real trooper. Take care, Jean   












 

hi miaki,

christian is with Dr lammi and team and Westmead children's hospital but i have heard good things about dr lindeman.  exjade is a possibility, in fact when he was transfusing there was an 8 yr old thal major girl whose maother has never done the desferal and has only given her the exjade which the doctors weren;t thrilled about she told me.  anyway it looks like he will start on desferal until he is about 6.   


 anyway at what ferritin levels should he start chelating? he's had 15 transfusions to date and his levels are around 1400 at the moment.  they seem in no rush.  i have to keep calling them and asking them what the next stage is. 

cheers
vic

Hello Vic

Welcome to the site and hope you enjoy reading our posts..

I was under Dr Lami some 30 odd years ago..he is a great heamatologists...I seen him a few years ago and he was happy to have seen me after all these years..

I go to the Prince of Wales hospital now and am being treated by Dr R Linderman who I find is very good at his job...I am happy with him as my doctor...

I am sure that Dr Lami will answer any questions you have about chelation for christian and other matters..

Hope this information is helpful to you..

Take care