Discussion Forums > Thalassemia Major

Great News!!!!

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jzd24:
Glad to hear your good news, Christine!  :clap :flowers Jean

§ãJ¡Ð ساجد:
Hi Christine!

I said it before that most probably Lauryn is "NOT" Thal. Major. I really have a gut feeling about this.

I hope this comes true :pray and Lauryn will "NEVER" require TransX at all..

 :yahoo :woot :heartred :boogie :clap :veil :heartpink :jumping :thumbsup :five :love :party

Try asking your doctor about the possibility of her being an Interm. or Minor and like Andy said a DNA test will be helpful in this regard.

Take care, Peace!

Christine Mary:
good morning sajid!

the dr mentioned yesterday,b/c of the 2 electrophoresis tests she had she IS Thal major. She still only has fetal hemoglobin. Does that matter? isnt it possible that she wont show any symptoms of being a major until later on? what can i ask for that will ultimatley determine this? the dna test? that would be a miracle.

Love,
christine

Christine Mary:
one more thing....

has anyone heard anything on danielle?
has anyone heard from miaki? she hasnt been on here for a while either.  ???
also...can someone explain why her hemoglobin went up a point from 9.8-9.9?

Bostonian_04:
Hi Christine,

The DNA test will confirm what Lauryn has. That was what was done by my daughter's doctor to determine the gene mutation and to confirm that my daughter had beta thalassemia major. At the same time they did the DNA test on me and my wife too, since they had suspected that we were beta thal minor/carriers.

Remember that beta thal major and beta thal intermedia just differs in the clinical manifestation or presentation (as the doctors put it). A person with double gene mutation can still be beta thal intermedia if the extent of each gene mutation is not severe. Say, if each of the gene mutation is of the type beta++ (a less severe form of mutation), then I believe the body can still produce some good RBC/Hb which allows the patients to go for longer durations without transfusions. However, if the mutations are combinations of beta+ (severe form of mutation - very little good RBC/Hb is produced) and beta0 (null mutation - no good RBC/Hb is produced), then the patient definitely has Cooley's Anemia and need frequent blood transfusions to prop up the Hb and prevent the body from producing the bad RBC/Hb.

Take care,

Bostonian

Andy,

The doctors at CHOB are still monitoring my daughter to determine the rate of decay of RBC in her body. They have an initial comprehensive care plan which they have indicated they will update based on how my daughter responds to the regular blood transfusions. They are hoping that since they intervened early, my daughter's growth and development will not be severely affected. Right now the plan is to monitor my daughter every two weeks - check her CBC and do electrophoresis as needed to determine her Hb counts (HbF, HbA and HbA2). The frequency of blood transfusions will be changed based on the reports.

They have not yet started her on Folic Acid. I will ask them about it the next time we meet - which happens to be tomorrow.

Thanks ....

Bostonian

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