Mom of beta Thal major baby girl

Hello Everyone!
My daughter ( 7 week old) has beta Thal major. I have been using this site for more info and to know aout the quality of life for these patients. Somewhere in the posts I read that transfusion interval for one of the member's son was increased from 2 weeks to 5 weeks by taking homeopathic medicine. Can they please tell us the name/details of that doctor?
My daughter is just being monitored for Hb right now. Oakland CH say they will monitor her and start transfusion when Hb falls below 7.
Also, I wanted to thank everyone on this site for the great work they are doing for parents and patients like us who need support at this time of their lives.
thanks

welcome to Thalpal Gurkiran. Since you are going to oakland, you are at the right place. Your child will grow and thrive and will get all the treatment she needs. so, do not worry. Just enjoy her and treasure all the moment. The time passes very quickly.

welcome to Thalpal Gurkiran. Since you are going to oakland, you are at the right place. Your child will grow and thrive and will get all the treatment she needs. so, do not worry. Just enjoy her and treasure all the moment. The time passes very quickly.

Exactly.

I stopped crying during transfusion when I was hardly two and half or three. I quickly adapted it as my routine and part of my life. Instead I used to enjoy them because I used to eat all my favorite food that day during transfusion. :P

I don't know how fast I grew.

Don't worry, the path is easy and with the modern treatment that is available today and also the trials undergoing to eliminate thal major and curing it is not very far. It's only a matter of time till someone breaks out through success.

Thal majors are now living in their 50's and 60's, considering they were born in the era where the word chelator was hardly heard. Then you can expect a lot and better life expectancy with today's treatment and drugs.

Just enjoy your child. I don't even remember I've thal major until my transfusion day comes which also hardly takes 5-6 hours and that's it.

-P.

Thanks so much Pratik and Bostonian. Your encouraging words mean a lot.
Right now, there are good moments and bad moments. When I read something positive like this, I feel we can conquer all but then sometimes, I feel for the pain/ discomfort that my little one will have to go through.

I just want her to lead a happy and normal life. And our family is committed to providing her that.
We are going to be seen at Oakland early next month. Hopefully, her Hb hasn't dropped much.

GURKIRAN

Prateek........I salute ur positive attitude.....it is an inspiration to others
good luck

Prateek........I salute ur positive attitude.....it is an inspiration to others
good luck

Thank you Aabha.

It's very little that I could do, providing others an encouragement and the boost that they need.

-P.

My daughter's Hb has dropped from 10.1 to 8.6 in just 4 weeks. Doctors at Oakland are going to monitor her CBC in 15 days now.
Is there anything I can do to slow the drop in Hb so fast?
Please advise.
Thanks,
Gurkiran

Gurkiran,

At this age, there isn't much you can do to slow down the rate of drop in her hemoglobin.  You may begin to notice some paleness in her skin and of her lips if her hemoglobin drops, continue to monitor her activity level and her feeding. 

My 14 year old son has thal major, her was diagnosed at age 3 months and he has been transfused since that time.  He is a very normal and active 14 year old boy with thalassemia being a very small part of his life.  We usually forget that he has thalassemia until transfusion day. 

As your daughter grows it will be important to give her a nutritious diet, vitamin supplements and keep her iron levels low.  The doctors at Oakland and thalpal can guide you through that.  Your daughter will grow up to be a healthy and very normal young lady, and she will live a long healthy life.  We are all here to support you along the way.

Best,

Sharmin

Gurkiran, we are in the same boat. Our girl is 15 weeks old today. In November her hb was 9.5 and a month later it had dropped to 8.7 (she was 12 weeks at the time). Her next checkup is in two weeks. I salute your doc for being proactive and ordering the CBC every 2 weeks. Ours hasn't said anything yet about checking more frequently but after the next appt and seeing where the hb is, I may request this also. God bless our babies and give us strength to give them everything for the happiest and healthiest lives

Thanks Sharmin for your encouraging words. I am so glad to have come across thalpal.com. You guys are already proving to be such a source of courage. Thank you!
I am monitoring Hunar's feeding and sleep schedule. To make things a little bit more complicated, she was born 4 weeks early so sometimes I can't tell if she is sleeping so much because she is lethargic from anemia or because she is a preemie.
We are taking her for another blood draw this week. Will keep you all posted.

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.

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.

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.

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. 

Gurkiran

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.