Discussion Forums > Thalassemia Major

Little Ari

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Bostonian_04:
Carisma,

This is the hardest part for a parent...when the nurses poke multiple times to get a vain. Few things that helped when our daughter was 2 to 3 months old were - keeping her hydrated, making her drink milk before leaving the house, keeping her hand wrapped with gloves or cloth to keep it warm and veins easily visible. After she turned one, getting a single poke got easier and I believe you will also see that. For the rashes, it could be Tx reaction. Here in Boston, little E always gets a dose of benadryl before TX starts to reduce Tx reaction. You could ask your hemo about it too. Best of luck and believe me , it will get easier as little Ari grows up.

Cari:
Thanks for all your support guys!  Just wanted to update and let you know that Ari's HG was at 13.8 today. (a week after the transfusion)  I'm so happy that it got to that level.  Does this mean it will stay up longer? 

My only concern is that they aren't going to transfuse him again until it drops back to 6...i hope they don't do that again....

Canadian_Family:
Hi,

The Hg of 6 is not acceptable by any means. For a thal major patient, the Hg should always be above 100 mark. Specially, little Ari is in growing years and should be kept at high level of Hg for normal growth. I don't understand why would doctors not transfuse him until his Hg is 6. You should push for Hg of atleast 100. Talk to your doctor and have Ari tested again in a week or so; to see where is Hg level is.

To answer your question the Hg of 13.8 is good but it will gradually drop over the period of two or three weeks, so keep an eye on him.

Best of luck.

Sharmin:
Carisma,

I am so glad to hear that Ari's hg is so nice and high.  You must notice the color change in him - especially inside his mouth.  Looking inside his mouth, at his lips and inside his eyelids will tell you if his hg is good or if it is low.  Now that his hg is high you have a good reference point. 

As Canadian Family said over the next few weeks his hg will gradually drop.  You may wish to discuss with your doctor what the plan is for his next transfusion.  There is little reason to believe at this time that he will produce his own hg and letting him drop to 6 again is futile and may affect his growth. 

Best of luck - I'm sure we will talk again before then,

Sharmin

Dori:
To avoid scarring in the veins: push on the poke place untill the bleeding stopped completely. That's what the anaesthesia specialist of my hospital told the lady next to me she usually get every week 20 pokes before it is succesfully - even with him. Without him it would be never succesfull.

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