Little Ari

I am glad to hear Ari (and parents) is doing well. 

Ari had his 2nd transfusion last thursday.  His hg went from 9.7 to 6.9 within 3 weeks. This time, it took a less time to find blood and more time to find a vein!  They poked him 11 times!  Poor boy was so upset...i think we were even more upset! 

Anyhow, he is doing better although i find him to be VERY red at times....he looks like a little lobster I've also noticed he's sweating more and that he has a rash consisting of small red bumps that do not seem to be irritating him but we can see them all over his body.  It did not happen right away - he was transfused thursday evening and we really noticed the bumps today..sun.  He had a similiar rash last month only it came about a few days after the transfusion.  It may or may not be related...i cannot really tell yet. 

Anyhow, just wanted to update...Hope everyone is well  

Carisma,

Glad to hear little Ari is doing well  finding vain will take some getting used to,and with that small kid,its hard for us parents too,but kids are amazingly resilient and they fall into a routine more easily then us,so it will get easier .

Zaini.

Charisma,

I am glad that Ari received his transfusion, and I understand the difficulty of finding a vein for transfusion.  Remember, that is the most difficult part of thalassemia - those moments that are spent finding the vein.  After that he gets in blood and he is healthy for weeks. 

I don't think that the drop is too rapid for a 3 week period.  Once they begin transfusing him at a pre-transfusion hg of > 90 he will not drop so low anymore. 

Wishing you, Ari and your entire family the best.  Ari will get better with this over time - and it will become much easier on you as well. 

Best,

Sharmin

Carisma,
My love and wishes are with Ari and you all....sorry I hadnt seen this post earlier....
I envy that you have someone like Sharmin to help and guide you the way she does....!
And I am surprised at how little the doctors know and do for patients of thal back home in India-even when it is a private set up. They are way too casual about it all....I wish that could change.....
Love,
Madhavi

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.

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....

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.

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

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.

Charisma,

I hope that things are going well with Ari.  It was nice catching up with you on the phone the other day, it had been a while.  I had wanted to call you back but lil A got really sick after.  I hope everything is going well:)  

Lots of hugs to the little guy,

Love Sharmin

Hi

My daughter Ms gayaytri m bajaj is thal maor 15 yrs old ,we had gvn rituxmax treatmnt two years back to controll antibodies , her requirmnt fr blood is increased once in week again ,pls suggest ,

Regards

Manish s bajaj
9987522211

Hey Gayatri.
Your daughter gets 1 unit of blood every week? I did not know antibodies were treated with antibodies. Did it work? What do you want to know from us exactly?
Warm wishes, D

Manish,

The best treatment for your daughter is to give her ritux again - this time one dose instead of the usual 4 should suffice.  This process may need to be repeated once or twice over the next year or two.  From there you can see how things are going. 

How are Gayatri's ferritin levels?

Sharmin

My son has picked up the Kell group antibody sometime in the last year. Now he is in more trouble. He has to have that type of antibody in the blood. This has limited his donours greatly. I am carrying his antibody card. Because of my lack of understanding, I assume that he will have to have blood with this type of antibody for the rest of his life. There are currently a couple of donours with this type of antibody which match his blood type. Not a comforting thought at all.