help needed please !!!!

GOD be with you i'll pray for your doughter
           
           khalifa
     state of kuwait

Mickey,

I agree that DNA testing is your best solution.  A few things would indicate possible thal related problems - such as the low hg - however the hg dropping so suddenly after transfusion, the platelets, spleen & liver enlargement, and bleeding in the lungs should not be associated with thal (as far as I know).  

Mickey was your daughter born premature?  Is there any history of another illness in the family?  

Please keep us posted Mickey, we are all here for you and praying for your family,

Sharmin

Micky,

May your daughter be healthy soon. I read all the post very carefully and the only suggestion (agree with Manal and Sharmin) is to do the DNA analysis, to rule out Thal major. Also, DNA may be useful in detecting any other underlying problem she may have.

God Bless....

Mickey,

I will review these files ASAP. I don't want to comment until I can thoroughly examine the results, other than to say that it is obvious that hemolysis is taking place. If I can find anything I will let you know within the next couple days. Seeing that the doctors are bewildered by this, I do want to take my time and make sure I don't miss something.

Micky,

I hope she is feeling a little better. Seeing the little angels in this condition is one of the toughest thing a parent can do.

First of all, let me tell you. I am just posting - what I think might be the case. Absolutely, talk to your doctor and below are just some points that come to my mind after reading the results. The treating doctor's would be the best judge and I am sure you might have selected the best doctor's for her treatment.

You don't have to worry about posting in here. We are with you in this ordeal. As someone mentioned, Alpha and Beta Thal Trait can co-exist, so I think doing a complete DNA test for all mutations of Alpha and Beta would be a good start.

Also, is Iron Deficiency anemia ruled out?

I highly doubt the child is Alpha Thal Major as if that was the case, she would have had problems while in the mother's womb as alpha globin is used for the child's growth in the mother's womb. There were no transfusion of the child during the pregnancy right?

There can be a case of Hemoglobin H (in that case you and your wife can be alpha thal carriers along with beta thal carrier). There might be other causes which I will try to see what I can find. Also, could you let us know if a DNA test was done on Kabir and if so, what was his mutation?

With her age being this young, looking at the reports and trying to know what is going on is a bit difficult. Do keep us posted.

Mickey,

Is this possibly related to Rh factor? It is the most common cause of hemolysis in newborns, and often does not manifest until a second pregnancy.

There is a good overview of Hemolytic Disease of Newborn at http://emedicine.medscape.com/article/974349-overview  If it is not Rh factor, it may be among the following issues. Please print this out and ask the doctors if any of these may apply and if testing is in order for any of these possibilities.

Causes
In the absence of a positive direct Coombs test result, other causes of pathologic jaundice should be considered, including intrauterine congenital infections; erythrocyte membrane defects (eg, hereditary spherocytosis, hereditary elliptocytosis, hereditary pyropoikilocytosis); RBC enzyme deficiencies (eg, glucose-6-phosphate dehydrogenase [G6PD] deficiency, pyruvate kinase deficiency, triosephosphate isomerase deficiency); and nonhemolytic causes (eg, enclosed hemorrhages, hypothyroidism, gastrointestinal obstruction, and metabolic diseases).
 
Similarly, hydrops can occur from nonimmune hematologic disorders that cause anemia, such as hemoglobinopathies (eg, α -thalassemia major), cardiac failure due to dysrhythmia, congenital heart defects, and infections (eg, syphilis, cytomegalovirus [CMV], parvovirus).



Common causes of HDN
Rh system antibodies
ABO system antibodies
Uncommon causes - Kell system antibodies
Rare causes
Duffy system antibodies
MNS and s system antibodies
No occurrence in HDN
Lewis system antibodies
P system antibodies

To be honest, thalassemia alone would make no sense for this reaction. It could possibly be thal minor combined with another factor.

Mickey,

Also make sure the blood been given is washed blood, so the blood taken does not attack her. As Andy as mentioned, do print the list of the possibilities and show it to the doctor to see what is causing the hemolysis of the blood

We are all praying for your family Mickey.  I think that the notes Andy gave you will be very helpful to your doctors in assessing her.  Is your wife's blood type B-?  That could explain a lot.  I wonder if the doctors have suspected thisas well because from the notes it appears that she was given IVIg. 

Sharmin

We are praying for you Micky,I hope she is feeling better now,please update us.

Zaini.

these are summary of problems goin with my baby and what doctors had done to there best but no result till yet. if you like please tell me your mail id ill pass u all reports if you know any1 who can help me in this case .

yes spleen and liver is enlarge. hb is sometime stable sometime droping to 5.0 from 10.0 in 3-4 days and sometime is stable until 1 week. platletts are reducing to 50000 then again increase slowly to 70, then to 1.40  like this by itself.

difficult to breath by its own yet. and we had done many test but cant find any reason y this all is happening.
we all are B+  BLOOD GROUP

dont know.

thx everyone/andy
i m just geitn this all info to my doctor now to check about these matter and ill post again all the mutation we had done for us in 15 mins. also we are today sending sample for doing DNA test of my baby to find out results again.

thx. thx a lot
ill reply immedeatly the feedback of doctors for these

andy i had mailed u all reports at your thalpal.com address please u can see we had done many of the test abovce you mention like
G6PD ( FIRST TEST WAS OK NEXT TEST SAYS DEFICENT BUT DOC. SAID THIS IS NOT CORRECT AS PER HER SITUATION ) , PAROVIRUS , RH SYSTEM( IF THIS IS FOR BLOOD GROUP DISORDER) , HEART -ECO IS PERFECT TILL YET,

REST IM CHECKING WITH DOC. WHAT ALL WE HAD COVERD TILL YET .

Micky,

I hope its just a temporary phase,and she'll be back to normal soon,Your family is in my thoughts and prayers,Good luck with the DNA.

Zaini.

Micky I have merged both your posts in a single topic,so that it would be easy for you and all the members to keep track of it.

Zaini.

thx zaini i was having problem with 2 post cauz cant upload more then 5 reports together thats y.
thx