Great News!!!!

Hi Everyone!

We took Lauryn to the hospital today thinking she was getting her first tx (shes 2 months old today),and thankfully,she doesnt need one yet! Her hemoglobin actually went up a point! Even before they poked her three times  , the nurses doubted she'd need one,b/c she looks so fantastic.Her color is brilliant,her eyes are white as ever, and shes gained 1 lb in 2 1/2 weeks. The Dr. said at this rate,she will probably NOT need her tx until shes 4-6 months.
Unfortunatley,they did have to poke her 4 times. Twice in the arm,once in the ankle,and then finally in the heel.(Which from now on,seems like her best bet).
I asked the nurse( b/c they had such a hard time getting blood),if she would most likely need a Port-A-Cath.The nurse told us that her veins are "actually pretty good size" and most likely, SHE WILL NOT NEED ONE! The dr. wants to see Lauryn in 3 weeks, and even then doubts she will need anything done. Our prayers were answered today.I will take everyday I can w/o her getting tx'd. Thank you all so much for your warm wishes and prayers.  :hug
I hope Danielles appt is as rewarding as ours.I'm praying that she is not in any pain and they can fix her heart arrythmia ONCE AND FOR ALL!

Love,  
Christine

Hi Christine,

Thanks great news indeed ..... I am so happy for you and Lauryn .... as long as she can stay without the transfusion, with her Hb above 9-10, the better. Also, it's great to know that she will not need the port-a-cath.

I am going into Children's tomorrow with my daughter, for possibly her third transfusion - and she is not yet three months old (she will be three months by the end of this week). I hope that she does not need the transfusion tomorrow and they can push it out by at least a week (and hopefully more) if her Hb is at a proper level (abobe 10). Let's see what tomorrow brings for my daughter

Take care ...

Bostonian

Christine

Very happy to hear the good news.  I hope Danielle is doing well too.

Warm Regards

Bharat

Christine,

That really is great news!     The Hb rising is such a relief. The longer transfusion can be put off, the better. Blood can be given earlier than chelation and the more you can shorten the headstart that iron buildup gets, the more the harmful effects of iron can be minimized. The fact that Lauryn's cousin is intermedia gives some hope that Lauryn's condition also won't be severe thal major, if it is major. I'm not certain that intermedia can be ruled out at this stage without DNA testing and even then it may not be conclusive. Time will tell, but right now, signs are encouraging.

Hopefully a port can be avoided. While there are benefits, there are also risks of infection and clotting. I think it's something to be avoided when possible. Sometimes the benefits outweigh the risks but if Lauryn has good veins it may never be an issue.

Bostonian,

Is your daughter on a folic acid supplement yet? I am also curious if they have talked to you about a comprehensive care plan yet. I think your daughter is in excellent hands at Boston Children's and will greatly benefit from their approach to care.

Hey Hey Hey......Mrs.Christine Great News.....I am very very very happy for Lauryn and You.

Glad to hear your good news, Christine!  Jean

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 and Lauryn will "NEVER" require TransX at all..

  :five

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!

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

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?

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

can someone explain why her hemoglobin went up a point from 9.8-9.9?

Hi Christine,

A difference of 0.1 isn't that significant and two different test results can have a margin of error. But the good news is that we can consider it that the HB hasn't dropped and has remained stable. This means the body is trying to make blood which is somewhat successful. Hopefully she would not be Thal. Major and could be an Interm. for which you can use Hydroxyurea when she grows up to boost and maintain the HB.

Take care, Peace!