starting desferal

hi all,
spoke to the haemotologist last week and christian's ferritin levels are high enough to start desferal..  :(he will be 5 in april.  i knew this day was coming but i was devestated when i got off the phone with the doctor.  the trasnsfusions i could deal with.   it was the doctors doing the needles, it was once a month and while we sat in the hospital for the day we had real quality time together, talking, drawing, playing, watching DVD's.

the start of desferal is another matter altogether. life as christian knows it will never be the same again and that is the part that saddens me.  he won't remember life before chelation.  does any body who has been transfused since a child remember life before chelation??  this is where i think he will understand that life is a tad tougher for him.

i know as a parent what i have to do.  the logic tells me be strong, don't let him sense the fear etc etc etc but deep inside me i worry because whether we like it or not iron overload causes problems and i want my little boy to live a full life.

QUESTION:  Ho long do you think it will take me to get the hang of the pump.  we have put in our order for the pump which should take 3 weeks then we go into the hospital and get trained. 

was one parent responsible for administering the desferal when you were children or did both parents do it.  my husband hates needles and blood.  i don't want to be the only 'pricker' in his life.  will he resent me at a young age for what i have to do every night??>?

cheers vic

Hi Vic,

This is indeed one of the most hardest phase in the life of a Thal. but as your child grows old, he will understand it.

Isn't Exjade available to your medical facilities? I hope it is and your family will be able to avoid the trauma and pain of Desferal.

As for your question, well the preparation isn't hard at all, you will get the hang of it in one lesson if your instructor is a good one and tells you all the minor details (like the tiny air in/out details etc.). Another thing, if everything goes well till the end, you won't even see a drop of blood, even on the bandage that you will remove after the injection site is healed.

Well, my father was the only one who had to do the hard part, as a matter of fact, he did it all of it since my mom is so emotional and can't even see anyone getting pricked. As for me, I didn't hate dad at all, but I hated the time when he set up everything and I'd wished that evening didn't come (since, we did the Desferal at night).

I hope that you get Exjade rather than all this, but if you don't, then I hope your brave little soldier will understand this soon that it is for his own good and will not let pain overcome him.

Take care, Peace!

thanks sajid for getting back to me

exjade is available but they are not giving it to under 6's at the moment due to findings.  i guess one year of desferal has to be better than 30 years. 

vic

Hi Vic,
In relation to your questions,I have thal major myself im now 27 years old and i remember VERY clearly from the age of 3 when i started desferal.Im surprised your son hasnt started desferal if he has been having blood he should have started desferal at 3 or 4 years old.My mother always done my desferal injections and i never resented her for doing so as i knew she was saving my life and when your son is older he will realise this too.(I dont think my dad would have been very good at injecting anyway,mothers generally better! well mine anyway.) and ive been told by doctors im quite healthy now cause i did start chelation desferal at a young age & had no probs (fingers crossed).Hope this helps.Im praying for you and your family i know its tough.keep strong.

Hi Vic

My heart goes with you, i really know how you feel but i am sure you will be strong enough to deal with this. You and your son will be in my prayers.
take care
Manal