Discussion Forums > Thalassemia Major

Feeling Down...

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Manal:

Many thanks to you Sajid and  Andy.

Andy, i will discuss this test with the doctor in the next visit and let you know.

thanks

 manal

Gabri:
Hi Christine,

thank you for inviting me to join this forum. I was busy last time and had not time to write. But now here I am.

Lauryn is in aperfect state. A decreasement of Hb from 9,9 to 9 is not so much in three weeks for a thal major, but it shows that production of adult Hb increas and the fetal Hb decrease. That is normal. The oppinion when it will be the right time to transfuse first time change from Doc to Doc. Some says the Hb should not underline 8 g/dl other means that only if a person can't manitein by herself an Hb of 7 g/dl you will be shure that it is a thal major and not intermedia. It is difficult to decide which oppinion will be better because both aspects can be right.

No one of use can predict when Lauryn will have her first transfusion. But annyway she is under control and more. She is growing up in a family who loves her so much. I think that is what she will need for all her life. It dosent matter if  she is Thal or not. You can't take away the thal, but you can give her all your love. I know what i am speaking from. She will be greatfull for your support it dosn't matter how thinks will go.

Best wishes

Gabriella

jzd24:
Hi all,
     Since I didn't know any of my hemoglobin levels until I was in my 20's, (when I found out I had thal intermedia), I can't give much advice on levels in children. I know I was sick a lot as a child, and I would have simple illnesses longer and more intensely than others in my family. But when I felt well, I had lots of energy. I think I subconsciously had this feeling that I'd better do everything I could while I could, until I was down again. I am sitill like this today!
     My spleen was enlarged, but they didn't correlate that with thal at the time. I also had pains in my legs, that my pediatrician said were growing pains. Otherwise, I developed fairly normally - went through all developmental milestones at the normal times. I am 5'3".
      It wasn't really until my early twenties that I started getting more and more sick with infections and very tired. My spleen was getting bigger and bigger. I seemed to be really sensitive to smells, chemicals, foods, etc. I was hospitalized for 10 days because I couldn't keep food down. Finally I found out what I had, and the doctor said my body was used to a low hemoglobin, and that I was just fine with a hemoglobin in t he 7 to 8 range. Then over the next years I had many problems with pain, infections, etc., and I finally, iin my 40's had my spleen and gall bladder out. The large spleen was making me really sick.
     Anyway, I didn't start on regular transfusions until I was 52! I wish I could have started on them earlier because my hemoglobin was going in the 6 range by then, and it was difficult for me to stay healthy. If  I could have started in my 20's, that would have  been great. I started having a lot of pain in my left cheekbone and my hips, shoulders, legs, etc. My bone marrow was working extremely hard. They think I also have fibromyalgia, so I don't know how much that affects everything.
     I hope this helps - sorry to repeat my story for the 700th time for those who have heard it. I think a person can usually do fairly well with intermedia until he or she gets older. This is just my story though, others may have different experiences. All in all, I have done fairly well.  Jean 

jia:
Hi,

My son was first diagnosed at 11 months with HB of 5.3. It has taken a bit of toll on his development. He was able to lift his head up muchat that time, because it was so big compare to his body. I feel that it is not advisable to let the HB get too low before transfusion. His upper jaw juts out so much he now has a speach problem. We are now trying to fix his pronunciation problem.

I have also refused a port. It was difficult to watch sometimes when he has to restrained by 5 adults, and they can't get the IV in until the 7th try, and that he would has screamed for 1 and a half hours. However, it'll pass. Since he was 2 years and 3 months, he sticks his own arm out and tells the doctor when he wants to be poked.

Best wishes to you.

§ãJ¡Ð ساجد:
Hi Jia,

That's a brave son you have!

May God Bless him!

Take care, Peace!

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