Discussion Forums > Thalassemia Major
BAD NEWS
Sharmin:
Mariam,
The more that I research and learn for your case, the more I am convinced that these ferritin readings do not reflect transfusion related iron overload in Aysam. As Andy has said, the flareups - the elevated WBC and ferritin are probably correlating with each other.
We are here for you,
Sharmin
aysam:
they told me yestarday why his wbc are alway high ?
never have they been low in his life ?
um they are asking me i am suppse to have answers fo them
Sharmin:
Mariam,
Your doctor's queries just provide more evidence that you need to be at a better center for your son's care. Hopefully his issues will be resolved very soon.
For now you can take comfort in a few things:
If the doctors felt that your son was in immediate danger they would have admitted him.
Other thalassemia patients have been in this situation(as per earlier posts)- similar symptoms - and they are now doing well.
Perhaps, your son's ferritin levels are not reflecting the actual iron concentration in his body - the rise in ferritin levels have been very drastic and unless if he has some other hereditary/non hereditary conditions that causes him to store iron - his iron levels are probably not as high as they ferritin levels indicate.
Ferritin levels can be very fickle, they can change in response to other things in your body.
I hope that the other clinic is able to resolve some of the other issues - and most likely the ferritin levels will look lower at that time too.
It is very rare that a two year old child would actually have a LIC of 4300 after only 20 or so transfusions. I don't think that a ferriscan or SQUID will be available or suitable to your young child. In your son's case, because of some of the other liver function levels it may be a good idea for a liver biopsy to be done. If it is done at the center that Smurfette recommended to you, chances are that it will be very safe (as I have said, my son has had two liver biopsies and they were a breeze). I think it would provide you with some very important information about what it actually going on if his liver tissue is studied. At his age, he may not do too well with the ferriscan anyway.
If you have questions about the liver biopsy you are welcome to ask me:)
Smurfette, have you ever had a liver biopsy? Any others in Australia?
Mariam, your son's blood tests are producing very rapidly changing numbers, that seem to be all over the place within a short time. Usually if ALT levels appear high they are tested for in 1 month time again. In your son's case they increased in a matter of days. It is difficult to say what exactly is causing these changes, the auto antibody he tested positive for may provide some clues - as well as the wbc and the fact that he is prone to frequent herpes episodes.
We are all here for you Mariam - praying for you and looking for information - so don't feel alone. It is not acceptable to any of us that our little Aysam - born in a time of such technical advances - should be suffering when his disease is a manageable one. We will do everything we can to learn about what is going on with him to give him the best chance to get things 'on track'. You are right, as his mother you NEED to be informed and you shouldn't settle for anything less - I wouldn't. Hopefully the next clinic will give you all of the knowledge you need from them.
Sharmin
Smurfette:
Sharmin,
To answer your question on biopsies, Yes I have had many, but I wouldnt recommend them on a 2yr old...
They are much too painful for me let alone a small child..
I have spoken to Miriam, hopefully we can meet up on wednesday nite if I am able to, permitting i dont have prior engagements..
I have explained a few things to Miriam about why maybe her sons ferritin is up and his Lft's...
I am going to get my mum to come along with me too, so she can get a parents perspective as well...
I agree with you Sharmin, in todays world, the little man shouldnt be suffering the way he is..
I am so appaulled at that hospital..
I know Nov is a long way Mariam, but keep faith and it will all become clearer for you...
I promise that we will meet..
Take care
Oh and another thing, I have read most of the posts in here, I am alittle appaulled as to how many dont read posts properly or dont understand the..
We live in australia and there is no way in the world he could have contracted the Hep C virus or any other virus...I know that the blood banks do the right thing...but then again anything can happen YES...
I am sure that Miriam would have been notified long time ago if any of that happened..
So please read and understand the posts..
If I sound harsh, I dont mean too..but they way some posts are written they are misinterpreted and the respondant will panic and worry for no reason..
Sorry about this..
aysam:
www.youtube.com
type in
baby stops breathing while asleep
you must all see this
its aysam
you will be shocked
Navigation
[0] Message Index
[#] Next page
[*] Previous page
Go to full version