help needed please !!!!

please i need help, my daughter now 2 months old since 1 month she is in hospital ICU. something is wrong with her its been 1 month all the doctors here cant digonse her problem and whats goin wrong. we cant find any answer after my 1st son kabir thal-major we had this daughter and aslo by god grace she is 100% hla matched with my son we were very happy all of sudden something bad happen. i dont know whether this post here on this site is ok but  i have no where to go i need your help. please help me i had attached all her reports of doctor and test done till yet and we cant find any answer.
her condition is like like
she was admitted on 27-jan-2009 in hospital with:
hb- 4.8,  live - 4-5 cms enlarged, spleen - 7 cms engalrd.  platlets were falling to 25000 level and we gave her blood trafusion of 50 ml 4 times to increase the hb and plattlets 2 time . now we check platelets itself incraese to 1.40 then fell to 60000 then again increase by itself. hb after 5-7 days fells to  5.6 again.
bone marrow biospy shows nothing, now doctors want to do  lever biospy cauz they cant find aything.  10 days back there was little bleeding from lungs so we put her on ventilator but in 8 days it was little ok.
all x-rays were done. body and bone structur is ok. just some pacthes in lungs. many blood test and virus test were done they found nothing till yet , ONE OF THAL . SPECIALIST THINKS OF  ALPHA THAL.  BUT WE BOTH PARENTS HAD DONE OUR TEST AND WE HAVE BETA CHAIN PROBLEM.

please help me looking at the reports if you can suggest anything might be helpful to me. really need help.

sorry i cant upload reports scan its 31. mb please reply me your email address ill mail it immedeatly. doctor summay i can upload if you can read it.

attached

Micky,

Are these your new born's reports? I am sorry but its very hard to read whats written in first three.

Zaini.

yes this is my new born girl child now 2 months reports. what can i say....

Micky,

I can understand what you are going through,but please tell us did you guys did CVS or Amnio while your wife was pregnant? I think Andy will be able to help you more with the reports,was hb electrophoresis done?

Zaini.

YES WE DID CVS IT WAS OK AND HB ELECTROPHORESIS IS DONE report attached now please u can advice..

Hi,
I'm sorry I cant help but just wanted you to know that our prayers are with your daughter. I hope she is well very , very soon
Zahra

Hi Kabir_love

I am sorry to hear what you are going through.  Hope your little lady gets well soon.  This is what I have been able to gather on reading results of electrophoresis (from Nurses learning)
Quote:
Fetal Hb (Hb F), is a normal Hb product in the red blood cells of a fetus and in smaller amounts in infants. It constitutes 50% to 90% of Hb in a newborn; the remaining Hb consists of Hb A1 and Hb A2 the Hb in adults.
Under normal conditions, the body ceases to manufacture fetal Hb sometime during the first year of life, and from that point on manufactures adult Hb. If this changeover does not occur and fetal Hb continues to constitute more than 5% of the Hb after age six months, an abnormality should be suspected, particularly thalassemia.
End quote.

Hope you get answers soon.  Take care

JAde

I also want to add that for thalassemia major, a head scan will show hair-like structure on the skull, if I am not mistaken.  Can anyone else confirm this?

The spleen and liver enlargement is quite baffling. 

Does she have fever?

Jade

she is now 2 months old thats y doc. and we have done while my wife was pregent thal. test and its fine we have checked she is atleast not b-thal. major.  yes she had fever during this time and after 3 days it was gone.

Micky, i find difficulty too reading what is written by hand. All what i can get is that her liver and spleen is enlarged , is that right

What are these tests for???
manal

Micky, i really don't have any idea but what i can say is that having fever,increased neutrophils,increased WBCs count may suggest infection

I hope Andy will be able to answer you

I will pray for her

manal

Mickey,

I am sorry to hear what you are going through.  I will take a look at the reports and see if I can research something for you.  Sometimes you can have alpha and beta thal - my husband carries both- have you confirmed that you and your wife don't carry alpha thal? 


I hope that your little one recovers very soon,

God bless,
Sharmin

Micky, i would like to add another thing, sometimes CVS can have a percentage of error and electophoresis could not be accurate at this age, so doing a DNA test for her would answer all questions regarding thal whether beta or alpha

manal

I agree with Manal,

Our prayers are with you and your daughter.

Zaini.