Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: aysam on May 22, 2008, 05:09:51 AM
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http://[b][/b] :hugfriend http://[bgcolor=#ff3100][img]http://[img][bgcolor=#00ff44]my son he is two now [/bgcolor] :hugfriend[/img][/img][/bgcolor]
he is my little man who i absouloutly adore and cherish
unfourntaly the time has come i will have to hurt him once more i must now start this infusion of desfral for him his iron levels are now 2000 so they wont to start him now he will hate me i refuse to do this so i have asked the nurse at the hostpital to every night untill i get used to anyways , also i was asked to take the dession wether to use the tablets or the needle has anyone or can ayone tell me what to do i am considiring teh tablets but heard very seriouse side affect the hostpital said i will be takeing teh tablets under my own risk ? please somene help me ??? i dont want to make the wrong dession for my little man[bgcolor=#f50000][/bgcolor]
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aysam,
Dont worry I know that there is a liquid coming very soon
Desferal is hard to do but vital for the time being, you dont want the iron level to go up too much.
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I understand how you feel. I wish this were easy, but it is not. This is a painful hurdle, but I know that you will not deprive your son of a chance to have the healthiest future available to him. As many other parents will tell you, it is difficult at first and you need to prepare both yourself and your child for that. He will hate it at first, but eventually it will get much much easier. I don't know what the best choice is for your son, but if it is desferal - I know that you can do it and we will support you through it.
My son is almost 10 years old, we began desferal when he was 18months. It was a nightmare at first, but now it is not - it is simply a routine. Aysam knows that you love him, and he will know that everything that you do is because of that love.
You will find many useful posts on this site giving you many ideas from brave parents - you will get through this - and once you bring his ferritin down - you will be glad that you did.
I wish there were a way to make this easier for you, I wish this disease were easier to manage and that it did not require so many needles and pokes for our children. But I know that you can be brave for your child - and when you don't feel very brave - I hope you'll ask for support. When we began desferal - we had a nurse come in and poke him for the first few days, and that did help.
Take care,
Love,
Sharmin
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Indeed this is a tough decision to make; but you know it's for his own good. Delaying chelation is more harmful than a few minutes of pain. Try to make him as comfortable as possible and engage his attention on other things while he is doing desferal. It is easy to do it while he sleeps but you have find out the best method your self.
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:hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend
THANKYOU ALL VERY MUCH BOTH AYSAM & I BELIVE YOU ALL CARE FOR US WE LOVE YOU BOTH ALL VER MUCH AND WISH THAT ALL THE CHILDREN DONT HAVE TO SUFFER IN THIS WORLD :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :grin :grin :grin :grin :grin :grin :grin :grin :grin :grin :grin :grin :grin :grin :grin :grin :grin :grin :grin :grin
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I feel very fortunate to be able to communicate with you and your adorable son - (god bless him). Don't worry, you are a wonderful loving mother - your son will be fine. Just take care of him - transfuse him and chelate him - until better treatment is available - and better treatment WILL be available. Your son will live a long happy life - and he is very lucky to have such a loving mother.
:bighug :bighug :bighug :bighug
Sharmin
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hi there
we all have to make this painful dision but we have to do whats best for them. my daughter have been taking tablets for three monthes now and she so far doese not have side effects she is only 2 and half. i have seen other ppl taking it and i have not seen them having major side effects.
All i know is that the needle burns the skin so badly specially if a baby goig to have it for over 12 hours everyday,so i think so should try the tablets
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How is our Aysam? Hopefully all is going very well:)