AYSAM MAZEH BLOOD RESULTS

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Offline aysam

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Re: AYSAM MAZEH BLOOD RESULTS
« Reply #15 on: October 22, 2008, 04:45:24 AM »
sharmin


white cells ?


why with my son they have been so high all his short llife
over 18 always  i know when u have a viral and infections it tend to go up  but with aysam its never been at a normal range
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

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Offline Sharmin

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Re: AYSAM MAZEH BLOOD RESULTS
« Reply #16 on: October 22, 2008, 04:48:11 AM »
Mariam,

Sorry I can't explain.  I was trying to draw everything together, but back to the drawing board.....I'll let you know what else I can come up with.  The doc hasn't gotten back to me yet. 

Sharmin
Sharmin

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Offline Sharmin

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Re: AYSAM MAZEH BLOOD RESULTS
« Reply #17 on: October 22, 2008, 04:53:09 AM »
this is why i thought that an autoimmune issue may be present, causing inflammation, high ferritin and elevated white cells. 

http://www.wrongdiagnosis.com/symptoms/high_white_cell_count/causes.htm

Quote
List of 7 causes of High white cell count

This section shows a full list of all the diseases and conditions listed as a possible cause of High white cell count in our database from various sources.

Acute inflammation
Bacterial infection
Chronic myelomonocytic leukemia - high white cell count
Fungal infection
Physiological
Pregnancy
Viral infection
Sharmin

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Offline Andy Battaglia

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Re: AYSAM MAZEH BLOOD RESULTS
« Reply #18 on: October 22, 2008, 04:55:51 AM »
The high white cells may also point to hemolysis.  http://www.bloodindex.com/leukocytosis.php

Quote
Among the causes of neutrophilia are...hemolysis (destruction of blood cells)...and hematologic abnormalities.

The low Hb before transfusion also suggests hemolysis as does the possibility of antigen involvement in the ANTI TTG ANTIBODY result. Is there a possibility that he has had an alloantibody reaction to the transfused blood? It would explain a lot.
« Last Edit: October 22, 2008, 05:20:26 AM by Andy »
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: AYSAM MAZEH BLOOD RESULTS
« Reply #19 on: October 22, 2008, 05:02:04 AM »
Could the antiTTG play a role in any of this?


Sharmin

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Offline Andy Battaglia

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Re: AYSAM MAZEH BLOOD RESULTS
« Reply #20 on: October 22, 2008, 05:26:51 AM »
Thanks Sharmin. I had actually copied and pasted the wrong line into my post. I meant ANTI TTG ANTIBODY. It all does seem to point towards infection or hemolysis or both.
Andy

All we are saying is give thals a chance.

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Offline aysam

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Re: AYSAM MAZEH BLOOD RESULTS
« Reply #21 on: October 22, 2008, 05:28:00 AM »
i dont know really he never had areaction if it is a viral or inflamatry he would not have it all his life would he ?
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

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Offline aysam

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Re: AYSAM MAZEH BLOOD RESULTS
« Reply #22 on: October 22, 2008, 05:29:12 AM »
ut can i add he has had many herpes before
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

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Offline aysam

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Re: AYSAM MAZEH BLOOD RESULTS
« Reply #23 on: October 22, 2008, 05:36:53 AM »
i want to thank everyone for your replys really


i love you guys its like aysam is part of all your famaliy

i have noticed he is actully pale not yellow and dark circules around his eyes you know when you dont get enough sleep like that
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

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Offline Sharmin

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Re: AYSAM MAZEH BLOOD RESULTS
« Reply #24 on: October 22, 2008, 05:42:51 AM »
Aysam,

Antibody related inflammation is something he would have all of his life - or as long as he has had the antibody.  Antibodies are something his body can chronically produce - in this case it is autoimmune antibody - which may or may not be responsible for some inflammation or chronic high levels of white blood cells.  

hemolysis would explain the elevated bilirubin too, right?  My son did not have high WBC with hemolysis - but that does not have to be the case for everyone.  

I think that elevation of WBC in herpes would be associated with an outbreak, the counts would not be elevated all of the time.  Every bit of info helps though!!

Sharmin
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Offline Sharmin

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Re: AYSAM MAZEH BLOOD RESULTS
« Reply #25 on: October 22, 2008, 05:45:40 AM »
Mariam,

 :hugfriend :hugfriend


Is he due for a transfusion soon? 

See how he looks in a day or so. 

Sharmin
Sharmin

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Offline aysam

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Re: AYSAM MAZEH BLOOD RESULTS
« Reply #26 on: October 22, 2008, 06:09:45 AM »
no he isnt due he only was transfussed one week ago not even so no but he isreally white werid i am so cinfussed and excusted and tierd of this and he is only two i stillhave somany years to battle you knowmaye aysam when he gets older he willl get better
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

*

Offline aysam

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Re: AYSAM MAZEH BLOOD RESULTS
« Reply #27 on: October 22, 2008, 06:13:46 AM »
you know nearly everyone here has or knows or famaliy memmber with thal it seemsim the only one who hasnt got good medical help and goodi nformation and good treatment even thou i am suppose to be in one of the best countrys
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

*

Offline aysam

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Re: AYSAM MAZEH BLOOD RESULTS
« Reply #28 on: October 22, 2008, 06:16:50 AM »
Subject: RE: about my son please read urgent
Date: Fri, 2 Nov 2007 15:29:27 +0000




Hello, Mariam, I will try to answer your questions.

First of all, I think that you should follow the advices of Lebanon doctor. They are absolutely right, and I fully agree with her.



I try to answer your questions, as below:


“when can we start using the iron overload machine pump what levels of feritin:”

after 18 months from first tx and when about no more then 18-20 tx are done. Give at least 30-40 mg/kg/day of desferal for at least 5 days per week.
“if the blood goes to 9 is this to low”:

it is better to maintain pre-transfusional HB between 9 and 10, that is to transfuse as soon you find she has HB below 10.
“why is his heart beating to fats is this related to thalassemia”:

Yes, I think it is related to anemia and nose occlusion. So, if you transfuse you may improve the heart beat. 
“what other problems can my son face with this chronic illness”:

virus hepatitis from blood born viruses if blood is not adequately screened for virus and also you may get immunization if blood is not well screened for ABO subgroups (CcEeDd, Kelly Cellano antigens on red cells, and you should use filtered blood for white cells (or done before, or at the moment of transfusion using appropriate filters)
“is there anything we can do here to help him more:”

follow this rules for transfusion and for iron chelation and he can be stabilized in better conditions, to afford alternative donor transplant (as MUD donor or Mother HLA mismatched donor)
“is there anything you can do to help my son get cured and what are the percentage in succeeding as the doctors here told me that there is a 5 % chance if he was to have a match with his sitters and if not 2% chance:”

It is not true; you will have a 90% chance to be cured in case of both a matched sibling and a good clinical conditions (class 1 of risk). In case of no donor available if he is in good condition and he can find a matched unrelated donor (MUD) he can have the same percentage of success as with a matched sibling. With the mother HLA haploidentical (only partially identical) we have we have about 60-65% chance of cure but still we face a rejection rate of about 35-40%.

 

As you probably know I am taking care of bone marrow transplantation in Italy Rome, I am clinical responsible of IME transplant center. I am not directly involved in the conventional treatment of thalassemia, that is done in the country centers. However, we take care of patients that arrive to Rome with a program of transplantation. Who gave you my name? how did you get in contact with me? I wait for your answer..

 

Paola Polchi, M.D.

IME Centre Rome, Italy
 

, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

*

Offline aysam

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Re: AYSAM MAZEH BLOOD RESULTS
« Reply #29 on: October 22, 2008, 06:18:28 AM »
Dear Mariam,

Sorry because you could not understand… I never use to read back, when I write..

‘Red pilot’ !!!, he phoned me today.. his name is Khalifa, he is father of a child we transplanted, is a good friend of me and is always trying to help people in the thalassemia families. So, I understand, now.

1st question:

About Ferritin 1000 or 18 tx? I will follow both, which is first. Ferritin is not always reflecting iron but also a phlogistic process, as tonsils and noose.. Because iron enters with the transfusions given I think that the amount of blood given is the more precise marker to know how much iron he received already. Starting earlier you may give desferal only 2-3 times per week, but after 18 months approximately from first Tx if you give about 1 tx/month you should give regular desferal. This is because there is a calculation, for that I can extrapolate the expected liver iron concentration to be about 6 mg/ g of liver. In case of lower levels of iron concentration, desferal may be more toxic.

2nd question:

About hemopoietic stem cell transplant:

Stem cell transplant is made to correct the genetic defect that produces anemia in the thalassemia patients. We documented that the possibility of success of the transplant is different depending on the HLA compatibility and on the clinical conditions pre-transplant. This is what we call the class of risk. It is statistically identified, and derives from history of iron chelation (regular or irregular); hepatomegaly and presence or not of fibrosis in the hepatic portal spaces (this is seen in the pre-transplant liver biopsy).

it is always STEM CELL, we can take them from marrow, from peripheral blood or from other sources, as cord blood or as fetal liver and so on…. We chose the source based on the clinical need: when it is a standard transplant, from an HLA matched sibling the marrow is the best source, because it gives enough cells, and low GVHD, that is the graft versus host disease, an immunological reaction of the new marrow to the recipient. When we use a donor that is not matched, as the mother, we need more amount of stem cell to bypass the resistance and we need to manipulate them to eliminate lymphocytes, so we need much more cells. Then we take both, peripheral blood stem cells and marrow stem cells, so we can obtain more cells and of good quality to reach success. If there is an HLA identical donor this is the preferred donor. So, I suggest to look for an unrelated donor, in the bank. If no donor is available, then you will have the mother as alternative,(unless you deliver new child, potentially identical donor!!)

When I say HLA mismatched, I mean partially matched: always a child get half genetic heredity from mother and half from father. Only rarely it happens that by chance mother or father come out HLA identical (when mother and father share some thing between them two).

So normally the mother is identical to her chid fro those antigens that she transmitted directly and is different from the half transmitted from the father to the child. The mother has an advantage as donor, because during pregnancy there is a tolerance of the mother for those antigens, paternal, that she did not transmit to her child, and in the other side, the child became tolerant to the non inherited maternal antigens. Those are the background of using mother. She is better, but also a sibling that is mismatched for the non inherited maternal antigens may be used. Generally it is a child so not enough cells can be obtained from him. This is way we prefer the mother.   

We transplanted 17 patients (of them 12 aged between 2 and 8 yo) from HLA haploidentical mother (haplo means 1 haplotype is identical and one haplotype is not). Of those transplanted, 15 are alive and 2 died (they were cured from thalassemia when they died). ) 11 patients had engrafted marrow, but only 9 are alive and without thalassemia, and 7 patients are alive and back to thalassemia. This is what I mean when I say about probability of 65% to be cured, 35-40% rejection, 12% of death.

I think that your child is in class 1 (regular chelation, no hepatomegaly, no fibrosis expected)  at the onset of the transfusional history. He has hepatomegaly now, but this is going to improve with adequate transfusion regimen, suppressing his expanded erythropoiesis. Therefore, he does not have organ damage due to iron accumulation and to inadequate transfusions, and also he has low risk to develop comlications due to the good standard of therapy in your country. This is what I mean when I say in good clinical conditions. He is in class 1 but has no donor. Then, I think that you have time. So, you can wait for further improves in the transplant success. In any case, even a child in class 1 with an HLA identical sibling may die for transplant related complications (about 5%, that is 5 out of 100 children in class 1 may die as consequence of transplant). In case of not HLA identical donor, as I told you, about 10-12%, 12 out of 100, may die as consequence of transplant. This is low compared to other diseases, but still is a risk, so I can not tell you that risk is 0.

I fully understand your concern, probably you should look in the bank of MUD donors or wait (until he is 4-5 years old at least, may be), proceeding with adequate treatment. In any case if you are willing, you may apply for stem cell transplant officially in our institution (IME) and you will receive a program and presumed cost. The timing of every thing is complex, requiring before the transplant itself, a period of about 3 months for clinical investigation on donor and recipient, for harvesting and preparing the stem cells from the donor and giving some oral chemotherapy to the child. Only after this you may proceed to the transplant that may require at least 4 month after and sometime longer. So totally, is about 7-9 months at least. 

To arrive in Rome, you may be supported by your ministry of health (so, ask for support, I do not know how) or by yourself that is costing about 120 thousands Euro, also the staying in Rome may require either or to rent an apartment, or to ask for help by an association of volunteers that help families during the stay in Rome, in a community manner. 

Do not be hurry, take your time. New improvements are expected continuously..

Ciao,

 

Dr. Paola Polchi

IME Rome, Italy

p.polchi@fondazioneime.org

mobile phone: 0039 3384467829

, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

 

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