Discussion Forums > Thalassemia Major

Mom of beta Thal major baby girl

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Gurkiran:
Princessm, hope your daughter is doing great. Sharing each other's  journey will be a great support network.
Do you see any paleness on her skin yet? I am always worried about missing any signs and not following up on any symptoms.

Canadian_Family:
You have plenty of good advice from our members.

Please note that your daughter is still producing fetal haemoglobin, therefore she will perhaps be just monitored for a while. Oakland is good place for thalassemia management, you are in good hands. Your child will at one point stop fetal HB production and when the time comes to switch to adult HB then you would see HB numbers sliding down and require blood transfusion.

As long as she is monitored and her HB remains above 9 or so, do not be alarmed. If the HB level is below 9 in two continuous counts then your child may need transfusion onwards.

Please note thalassemia is a genetic condition, homeopathic although is an established science but does not have a cure for thalassemia. You may consider this option for general health of your child but do not expect things like transfusion duration increased from 2 weeks to 5 weeks.

Last advice, always seek knowledge and ask lots of questions (on this forum or to your doctor). The more knowledge you have about your daughter condition, the more you will be able to take care of her and better manage this condition.

Keep visiting.

Andy Battaglia:
I just want to note that you are getting great advice from these posts and everyone is right. You won't find better care than in Oakland, and in fact, probably the most important thing we could tell you is to go to Oakland. The one thing I learned observing Dr Vichinsky with the father of a newborn is that the most important thing is that the parents bond with their child. There's plenty of time for the medical side, but sometimes parents get so caught up looking for answers that they spend less time with the baby than they should, and that is the most important thing all parents can do for their kids.

Gurkiran:
Thanks Canadian_family and Andy.
 During her last visit, he Hb was 8.6 and we are going again today for blood draw. So, if it is below 9 now, they will start transfusion? I thought they wait until it drops below 7.
Also, regarding homeopathic medicine, that's where our research has led us that it might just be good for overall health.
I cannot be grateful enough for you guys and this website for the work you are doing. The vast knowledge I have obtained through you guys is priceless.
Andy, I will do my best to spend quality time with her alongside getting the best medical care for her. I don't even mind multiple late night feedings for her.  ;D

Gurkiran

Andy Battaglia:
Gurkiran,

In general the rule for beginning transfusions is two consecutive Hb readings below 7. However, in recent years, it has been recognized that there is little reason to wait until it's that low if it is certain that transfusions will soon become necessary, and some doctors will start transfusing once the Hb drops below 9-9.5. The reasoning is that low Hb can slow growth at a critical time in the baby's development, and transfusing earlier has proved to help provide a normal growth rate. At the Centers, each patient is an individual. The decision to transfuse will be based on your child's requirements and not just the formula.

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