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Mothers of children with sickle cell

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expect the expected!

Tosha - posted on 01/17/2010 ( 1 mom has responded )

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My son was diagnosed with sickle cell disease when he was only 2 weeks old and he is 41/2 months old now. Even though he has the mildest form, which is called "Sickle Beta Plus Thalessemia" he is still pretty much at risk for the samethings as one with type SS or SC. I've done a lot of research and have talked to a lot of doctor's about his condition and everyone say's something slightly different. Im worried about the pain crisis, low hemoglobin, the enlargement of his spleen, sepsis, pnemonia and other debilitation condition's and illnesses I can't protect him from. I've never felt so helpless in my life, especially since I didn't know I carried a Thalesssemia trait. I have a 6 year old with the same father and he doesn't have anything at all. The doctor said it's a 1 in 4 chance to pass it and that's just how the dice are rolled! Very reasuring right?

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Shelbra - posted on 03/07/2010

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13

My son has SC, he was diagnosed at 2 weeks as well. He is now about to be 11 years old and has not had any problems associated with his Sickle Cell. Thank God! He did keep fevers from a baby up to about 2 years old, that was while on the penicillin. Once I took him off the penicillin, the fevers stop coming. It was as if the penicillin keep his immune system vunerable. I never informed the doctors that I took him off the penicillin, and one day I went in for a checkup and the doctor stated that his lab work looked like a normal kid without sickle cell. Now while he was on the penicillin, the lab work always came back low. Sometimes as a parent you also have to look at was good for your child, I'm glad I did. I just recently had a baby 3 months ago and they are thinking that she has Sickle cell as well, but further confirmatory testing is needed. Because she was born three months early and needed a blood tranfusion while in the NICU, they are not able to perform the test and the transfused blood is completely out of her system. I carry the trait. I currently have four kids, two without Sickle cell and possibly two with it. So it is a hit and miss situation. So far I have been blessed with no issues. I am hoping that if my baby is diagnosed with it, that she does as well as her brother has. My son eats very well balanced meals and drinks plenty of water. I know water helps carry the oxygen through your body so I'm not sure if I am helping him that way. But he does drink very large amounts of water. Hope this helps, I don't treat my son like he has SIckle cell, but I'm still cautious. God has blessed us this far with no issues and I hope he continues to do so.

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