AYSAM MAZEH BLOOD RESULTS

Mariam,

Please see Smurfette's post:

http://www.thalassemiapatientsandfriends.com/index.php?topic=2032.135

This young lady has done very well in Australia - she is offering you some great advice and direction which I believe will help our little guy very much. 

Sharmin

Dear Mariam

I read Dr. Paola reply to you and thanks for sharing because it is very informative but i can see that you are now distracting you attentions in many directions. Thinking of a bone marrrow is okay but from my point of view is that you should now concentrate on two main things

1- Removing the iron overload before it damges any organ. this will not be achieved unless you give the right dose for your child according to his weight or else you are giving him medicaton with no use. So as Andy said increase the dose slowly and gradually until it is suitable for him especially that he is on regular transfusion.( it doesn't make any sense giving chelators without a suitable dose)

2- Try to find out what is the cause of the increased white blood cells. This will answer many questions including the abnormal increase in ferritn

I know that your special circumstances and being introduced to many thins at one time could confuse, depress and annoy you and at the end the target will not be achieved. So lets togather set these goals and work on them.

I think i will be able to get you Dr. ali Taher's phone number and please read Smurfette post as Sharmin told you cause she will be of great help to you

Good luck

Mariam,

Is Asyam getting filtered blood and does he have herpes infections often?

I'm sorry for your child.

My suggestions may be out of the way, but though I want to share my thoughts.
1) Is he diagnosed with thalassemia?
2) Is his ferritine tested more times?
3) What about neonatal hemochromatose? The results looks like this, I believe.
4) i dont have thal but, pyruvate kinase deficiency, and we also collect iron from our food. A lot of persons don't agree with this idea, but there are results of that and I really believe in this.
5) How old is your son?
6) Infections can raise his ferritine level.

Take care,
Dore

To all the good people here,

I have spoken to Miriam today and suggested she get a second oppinion. From what she told me was that she has an appointment with a specialised thal haematologist at the hospital that I go to and its also for children as well...

I am sure that the doctor will do all the necessary tests that need to be done and she will get answers I am certain of that..

Its just that hospital that she takes her son to, isnt equiped with doctors who know about thal and dont understand...If I ever happen to meet one of those doctors I am sure that I would probably give him a piece of my mind..

Mariam you will be taken care of at the Sydneys Childrens Hospital.. I am sure of that... Dr Sue Russell is one of the best..

Hope your all well..

Peartree Girl I can answer all those questions for you..

Yes
Yes
Yes and more yes

yes we know that infections can raise our ferritins.. please read other posts..

Thank you

Thanks Smurfette for your great help. We all appreciate it so much and i am sure now that Mariam is in good hands.

manal

yes, I did read the whole topic now.

a) Too much Vit C has a bad effect on chelation therapy
b) regular transfusions, regular chelation (never stop immediately, only by too worse reactions).
My personal experiences: I'm allergic for all chelations meds. Kelfer/Deferiprone/L1 gave me swollen knees and because of that I was unable to walk good enough. And I couldn't stop eat. I was always hunger. All the time; day and night.... I got a reserve for my try of Exjade ;)
desferal: deadly allergic: swollen. red. itchinng. If you say he bloats, will that say swollen?
Exjade: I'd all side effects. sick, sleepy all the time, dizzy and black for my eyes. I'm give it a 4th try at the moment. Every 2weeks I take an other 125mg tablet.
c) I know it's vey difficult for a child, but are this tests done fasting? That will give (more) regular results.

I hope the second opinion will go well and that they find soon what your son has.

Take care,

Dore
p.s. my english is a bit bad at the moment :$

Hey Mariam

How are you doing, hope Aysam is doing well

Please update us about his situation

Wish you all the best

manal

I hope little Aysam is doing fine Mariam,please update us.

Zaini.

Hi Mariam,

I hope that Aysam is doing well - please update us on his treatment. 

Sharmin

Hello,

Hoping that Aysam is doing well.

Take care.

Hi Mariam ,
How is Aysam doing ??.. ,i hope & pray that he will b fine , pleas keep updating us to his health progress , it will give us the feel satisfication to us, that Cute boy is being treated well ... it will realy nice to hear abt his healt & himself . lots wishes and for Aysam ..

Best Regards
Take Care
Umair