3 yr old has AA

[barbes99]

Afternoon all, I am a bit worried about my son at the moment he first fell ill when he was 9months old, he needed blood an platelet transfusion, he had know neutrafil, WBC was very low. He was diagnosed after quite of few test when he was 14 months old with severe aplastic anemia. He started ATG, an was on Cyclosporine for a year. During this time we did IVF to make our beutiful son Jayden who is the perfect bone marrow match. Once Anthony finished his medication, a month later he relapsed an required a blood transfusion. He went another 5 months without blood, then had one recently. He has gone know 6 weeks without one. My son can not really talk so its sometime hard to know whats wrong, it hard to tell if his red bloods go down has he is still very active an doesn't go pale. All his other counts are excellent. I would like to know what sort of early symptoms to look for, an should we do the BMT. Or since all his other counts are fine there is know need for it. Also when getting bloods transfusion does it hurt. Sorry I know so many questions, its been a rough journey.

[mscrzy1]

Hi, I'm so sorry that your baby boy has had to struggle so early in life like he has, but I'm happy to hear that he has a brother who is a perfect match. Yay! As for your questions, to keep an eye on my hemoglobin, I've always checked the lines in my hands. With his fingers straight and his palm up, push his all fingers back just slightly so that you can easily see the lines in the palm of his hand. If the lines turn red quickly when you push the fingers back, then his hemoglobin is ok. If it takes a while for the lines to turn and the color is pink or maybe no change in color at all, he's low. You can also watch the color of his nail beds. They will be pale when he is low and when any pressure is applied to his fingertips, they will turn light pink or even white instead of immediately turning red. For all these examples, compare to your own to get a good idea of what normal would look like beforehand.

As for the blood transfusions, they don't hurt at all. If he doesn't have a port, the IV stick to get the transfusion can stink sometimes, but the actual transfusion itself doesn't hurt a bit. The only thing that can be bothersome during the transfusion is that I would get really cold. If the IV was in my hand, I would ask for a warmed towel to wrap my hand in. If the IV was in my arm or after I got the port, it was in my port, I always asked for a blanket to be warmed and thrown on me. The blood in the bag is kept pretty cold and as it goes into your veins, you start to get really cold. Other than that, nothing much else to report on that front. I'll be sending blessings your way for your sweet little boys.

[barbes99]

Thank you for your reply. Anthony has been going great for the last year year just one blood transfusion. We started to feel like things were going our way. Then boom little man needed blood three weeks ago, his bloods a dropped so quickly he needed another transfusion. He had a bone marrow biopsy yesterday will find out in a week there plan of action. Either atgam or bmt from is sibling. Not sure which to to choose what does everyone think.