AmandaSB
09-28-2006, 01:56 AM
My son was diagnosed at one month old with HB Koln and Beta Thalassemia Minor. He's always had low blood test results and he's not growing right. He's almost two now and still wears 6-9 month cloths. I can't seem to find any understandable information about his condition and I feel lost. It's really getting depressing for me to even take him to play with other kids because of his size. His cognitive and motor skills are perfect but he's just not growing. Does anyone have any information that could help me make sense of this?
ticker
10-01-2006, 07:48 PM
Hi Amanda. What does his pediatrician say? I am not familiar with his condition, is there a specialist he could see for this?
AmandaSB
10-01-2006, 10:46 PM
His doctor doesn't tell me anything. He's seeing a specialist in Hematology but she's never encountered his disorder either. They can only find one other case that has been documented.
Hi Amanda,
I can't help you totally, but b/c thallessemia is so rare, I wanted you to know you are not alone. I have thallessemia minor, as do both my sons. Maybe you can tell me, I am not sure how to know if it is beta or not? Anyway, I don't know anything about HB Koln, but my boys don't have a growth problem. They do take Icar pediatric iron twice a day.
The other thing I wanted to make sure you know (which you may) is that if two people with thallessemia minor have a child together, their child has a great chance of having thallessemia major, which is a life threatening condition. Neither my doctor nor my pediatrician told me this, I found it on my own, and when I asked, she said yes, that was right. So, when our kids grow up, we need to make sure they are aware before they get to the point they could have their own kids.
I wish I could help you more w/ the growth problem. Is your son taking iron? I get mixed advice about this, as my mom has had this all her life and has never taken iron as she has been told those w/ thallessemia don't need it, but my kids are iron deficient and were told they need it. It is so confusing to me also!
Good luck and I'll say a prayer for your little boy.
KG
