HELP SOMENE

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Offline aysam

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HELP SOMENE
« on: October 22, 2008, 12:20:23 AM »
AYSAM MAZEH
BLOOD TEST RESULTS
 
 
HEIGHT                                             89
 
WEIGHT                                            130 800
 
BODY MASS INDEX                             17.4
 
BODY SURFACE AREA                         0.58
 
 
 
 
LIVER FUNCTION TEST                                                                                           
 
 
 
bilirubin total                  5
 
bilirubin (conjugated)   2
 
aspartate txaminase     80
 
alanine txaminase          134
 
gamma-glutxferase        16
 
alkaline phosphastase         165
 
 
ca/mg/phos
 
calcium         2.48
 
MAGNESUIM       0.76
 
phosphours     1.81
 
 
 
FBC
 
HAEMOGLOBIN       100
 
WCC                              19.3
 
PLATELETS             385
 
HCT                         0.29
 
MCV                   79.0
 
MCH                      27.0
 
T&b
 
LYMPHOCYTE COUNT    9.20
 
 
CD3  T CELLS                        5.15*
 
 
% CD3 T CELLS                    56
 
 
CD4 T HELPER SUBSET          3.22
 
 
 
% CD4 T HELPER SUBSET           35
 
 
CD8T SUPPRESSOR SUBSET            1.75
 
%CD8 T SUPPRESSOR SUBSET          19
 
 
CD4:  CD8 T CELLS                         1.84
 
 
CD 16/56 NATURAL KILLER CELLS           0.46
 
 
%CD 16 56 NATURAL KILLER CELLS           5
 
 
CD 19 B CELLS                                    3.56
 
 
% CD   19 B CELLS                              39
 
 
 
ATYPICAL LYMPH                        0.4
 
BLOOD FILM
 
 
NORMOBLASTS / 100 WBC            4
 
 
 
TOXIC GRANULATION                    +
 
 
ANISOCYTOSIS        +
 
 
POIKILOCYTES                    +
 
 
POLYCHROMASIA                    +
 
 
OVALOCYTES           
 
 ROULEAUX                     +
 
FRAGMENTED CELLS            +
 
 
TARGET CELLS             
 
 
COAGULATION-PLASMA
 
 
 
PLASMA PROTHROMBIN TIME     14.1
 
INR                 1.0
 
APTT             30.7 *
 
FIBRINOGEN         2.7
 
 
 
 
IRON STUDIES 
 
 
 
 FERRITN        3723     DONE 13 AUG  08
 
BLOOD TRANSFUSED 14 AUGUST 08 SO MUCH HIGHER NOW
 
 
SEND AWAY    FERRITN LEVELS 1995
 
GLUCOSE       4.9*
 
ALBUMIN         50
 
GLOBULIN   25
 
 
A/G RATIO    2.00
 
ANTI TTG ANTIBODY     2*
 
ANTI TTG ANTIBODY INTERPREATION   TTG ANTIBODY
 
 
VITAMIN C           57
 
 
ANYONE EXPLAINE WHAT THESES MEEN ?
I AM JUST ABOUT TOP HAVE A NERVOUSE BREAK DOWN
 :computer
, 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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Kathy11

Re: HELP SOMENE
« Reply #1 on: October 22, 2008, 12:57:41 AM »
Hi Aysam.
Your child is not in immediate danger.
Please dont break the computur because you would not be able to read the results. :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl.

If you really want an immediate report you can always go back to the doctor and ask them for an answer and make sure you dont leave there surgery untill you are satisfied.
you have the right to know and the doctor whom requested the test is the person responsible,to give you a respond

Good luck.
Kathy

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Offline Sharmin

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Re: HELP SOMENE
« Reply #2 on: October 22, 2008, 01:02:42 AM »
Mariam,

I have emailed the report to a very good doctor in the US - once he reviews it I will respond to you immediately.  Manal and I are both doing our best to get you answers, but we want to make sure we give you the right ones rather than speculate. 

Take care and try to be calm for yourself and your kids,

Sharmin
Sharmin

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Offline Sharmin

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Re: HELP SOMENE
« Reply #3 on: October 22, 2008, 01:39:32 AM »
Mariam,

Did your son have any illness or infection at the time this blood was drawn?  Or did he appear generally unwell compared to normal?

Sharmin
Sharmin

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Offline aysam

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Re: HELP SOMENE
« Reply #4 on: October 22, 2008, 02:26:34 AM »
aysam looks fine to me a bit yellow and stomach a bit swallon but fine no infection at the time of results oh y i asked the dr and he said he will be fine thats all they say to me
, 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 Sharmin

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  • Little A
Re: HELP SOMENE
« Reply #5 on: October 22, 2008, 03:00:23 AM »
Mariam,

I am still waiting.  I think that some of his results indicate inflammation or infection but I can't be sure. 
Also, many children who are chronically transfused don't begin chelating until 2 to 5 years old.  We find it surprising that Aysam's ferritin has already climbed to such levels in such a short duration.  Also, it is surprising that the iron overload is already affecting his health, especially since he is chelating and has been transfused for such a short time.  Your doctor needs to determine if these findings are directly related to thalassemia - transfusion/chelation related complication. 

Please be prepared with all family history and information before communicating with the contacts that I have mentioned - as well as Aysam's transfusion history.  BTW, were you able to read my previous post?  Was Aysam's glucose level as fasting or random measurement?  And there were a few other questions as well.  Be prepared with all of these answers when communicating with doctors or thal clinics. 

Sharmin
Sharmin

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Offline Sharmin

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Re: HELP SOMENE
« Reply #6 on: October 22, 2008, 03:04:09 AM »
Mariam,

I think that this info will be helpful for Andy too when he has a chance to see the results so that he gets a clearer picture.  It is good that the results are compiled together so that he can better view them all.

Best of luck my friend,  we are all here for you and Aysam,

Sharmin
Sharmin

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Offline aysam

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Re: HELP SOMENE
« Reply #7 on: October 22, 2008, 03:26:35 AM »
shamin
i think he wasnt fastting actully and no he has no infection at all you knwo what is very weird aysam white blood cells have always been very high never normal always on high side he ooks well eats drinks everything he has no sigh of anything xcept he enlarged stomach and  thats all nothing he looks very healthy iam preaperd to answer all qustions asked i am here watiing he some infection before but viral thas it nothing else he is very strong biy very you would never pick up he has oe problem letter a lone 100 problem  lol maybe his iron gieving him streanth i dont knwo but also his iron now is 3729 b4 a transfusion so its around 4000 now i called the dr and said i wnt to start aysam on defral and combined with the ejade they refused do they knwo what they are doing am i over panicky what is it is it me or them i dont knwo anymore
, 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 Sharmin

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  • Little A
Re: HELP SOMENE
« Reply #8 on: October 22, 2008, 03:38:22 AM »
Dear Mariam,

It is not you, it is in fact them.  They are sticking to what they know and they are not altering the plan for your child.  In most cases, that I have seen children's ferritin levels are not this high so quickly, but for whatever reason Aysam has overloaded very quickly for someone his age - and for someone who has had so few transfusions.  I wonder what else is playing a role in all of this - the low mineral values, the inflammation/infection type results - a few things are telling me that he may be celiac.  I don't know enough to help you confirm this but he has had a very bloated belly, he has the antibody often associated with celiac and the bleeding that you mentioned.  I wonder if this is somehow contributing to the high iron levels somehow - which is in turn accumulating in his liver and causing all of the symptoms of iron overload.   

His doctors should be treating him as an individual rather than sticking to the normal protocol, because most kids will not have get iron overload this early. 

You are not over reacting, trust me I have panicked many many times when I was confused about a test result.  How can you not?  It is your baby.  I have been trying to get more information for you such that you can get the treatment you need in Australia.  I will get back to you when I get a response.  BTW have you sent a PM to smurfette? 

My son had an iron level of 2880 - combination therapy - dfo/exjade lowered his ferritin levels to 1320 within 6 weeks.  It really does work. 

Please find out if he has digestive issues and let's get those iron levels down everything else will follow.  Please also make sure he gets his supplements, he needs to be protected from the high iron levels.  Make sure that he never goes 24 hours without chelation. 

I will let you know if I find out anything else,  I am sure Andy will give you the most complete answer!!

Sharmin
Sharmin

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Offline poo gill

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Re: HELP SOMENE
« Reply #9 on: October 22, 2008, 03:41:17 AM »
Hi Sharmin

You are right, normally of all the kids I know it has been that they have started chelation after atleast 20-24 transfusions. With Aysam he is already on chelation and still it is not helping.

"We are like angels with just one wing. We can only fly by embracing each other." 

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Offline Sharmin

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Re: HELP SOMENE
« Reply #10 on: October 22, 2008, 02:54:22 PM »
Yes, Manal was thinking the same thing. 

It just makes us think that another factor may be involved in causing the overload,

Sharmin
Sharmin

 

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