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Slow rate transfusion and warm antibody

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Offline Sharmin

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Re: Slow rate transfusion and warm antibody
« Reply #15 on: May 02, 2008, 06:16:21 PM »
Thank you again Andy,
Our doctor says that the information you provided makes a lot of sense.  I will print the articles off for him - he usually takes the information and shares it with a few other doctors - they all agree that this course of treatment makes a lot of sense. 

And the good news is that they have got some blood for us!! So we are off to the hospital to get his slow & small transfusion!

Thank you everyone - we love you all!!!!!!!!!!!!!!!!!!!! :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend
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Sharmin
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Offline Sharmin

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Re: Slow rate transfusion and warm antibody
« Reply #16 on: May 03, 2008, 06:49:09 AM »
Andy,

We shared all of the information with our doctor today.  He has taken our print offs and he is studying it all - he wants to fully understand it before deciding our future course of treatment.  He is the best doctor ever, he spent a good 1 1/2 hours with us today - at the end of his work day to make sure he understood our views - so that he could research them further.   In the meantime - he decreased the transfusion from 20cc/kg to 15cc/kg - and the rate as I have mentioned from 90cc/hr to 80cc/hr.  We will return in 2 weeks.  Also, with IP6 and a slight increase in desferal the ferritin has decreased from 2300 to 1700.  The information you have provided will make a great difference - it is already starting to:)  Thank you for your hard is making things much better. 

Sharmin
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Offline Sharmin

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Re: Slow rate transfusion and warm antibody
« Reply #17 on: May 12, 2008, 08:30:44 PM »
Andy,

My son was transfused on May 2, his pre-transfusion hg was 80.  He was given 15cc/kg rather than his usual 20cc/kg - at the slower rate I mentioned. 

Today, 10 days later his hg is 78.  I am a little disappointed because I had hoped that the tx would last 2 weeks, but I suppose we did start pretty low.  Maybe we can try transfusing 1 week apart for a while until his pre-tx hg is high enough to last 2 weeks with the lower volume.  I'm glad that we are getting expert help soon, because things are definitely getting worse, considering that he is on the prednisone and his hg is still falling quite rapidly  :dunno.  In the beginning prednisone was able to make him last 5 weeks, and now we are barely getting through a week.    We desperately need a change in his treatment.  I will let you know what his doctor decides to do. 

Thanks again Andy,

Sharmin
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Sharmin
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Offline maha

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Re: Slow rate transfusion and warm antibody
« Reply #18 on: May 13, 2008, 05:34:49 AM »
Hi Sharmin
Praying your soldier gets through this as soon as possible. Wouldn`t it be beneficial to know his post trans hb just to know the rate at which he is dropping. Hassan always gets 15cc/kg and there have been times when his post trans hb had shown an increase of a little less than 2gm/dl and sometimes even showed an increase of over 5gm/dl depending on the quality of blood. What your son is going through is something very different but what I want to point is perhaps his hb did not increase much in the first place. Wishing your son loads of health
Maha
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Offline Zaini

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Re: Slow rate transfusion and warm antibody
« Reply #19 on: May 13, 2008, 12:57:21 PM »
I hope everything will turn out fine sharmin,this problem is scary,my prayers are with you and maani. :hugfriend

ZAINI.
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Offline Sharmin

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Re: Slow rate transfusion and warm antibody
« Reply #20 on: May 13, 2008, 01:53:58 PM »
Thank you for your prayers Maha and Zaini  :hugfriend
Maha, we have at times done post tx hg - but the doctor has not done it lately.  Thank you for the reminder, I will mention it to him today. 

Andy, with the slow rate, lower volume tx - should we notice the lower antibody activity (rapid hemolysis) with each individual tx - or are we looking for a long term benefit - after a few transfusions a reduction in the rate of hemolysis?    My guess was that we are looking for a change with individual tx - because that particular tx is causing less shock to the body - hence triggering less antibody activity. 

Thanks again Andy, I will update you all after our tx today - sending my best to all of you  :hugfriend :hugfriend

Sharmin
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Sharmin
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Offline Andy Battaglia

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Re: Slow rate transfusion and warm antibody
« Reply #21 on: May 13, 2008, 04:54:51 PM »
Sharmin,

Yes, the hope is that a slower transfusion rate will cause less hemolysis. And with a lower amount of blood being transfused, the HB will drop more quickly just because the same volume of blood isn't taken. Weekly transfusions are often the answer until the antibody problem is under control. Prednisone shock may be the answer, but I would wait and talk to Dr Vichinsky before taking that action.

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Offline Sharmin

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Re: Slow rate transfusion and warm antibody
« Reply #22 on: May 13, 2008, 11:29:04 PM »
Thanks Andy,

Today they give him 1 bag - less than 15cc/kg and we will go in for a second bag on Friday.  We then plan on going in weekly until his hg is high enough with the one bag to tx every two weeks.  We are continuing with the 10mg alternate days of prednisone until we speak with Dr. Vichinsky.

Our hope is to get on a better treatment plan after our visit in Oakland, also to bring back valuable information for other patients.  I hope what we learn will also help Rositka and the family in Greece.  There are ways to deal with this issue we just have to learn how it can be managed. 

Thank you everyone for your wishes and thank you Andy for the wealth of information and insight.

Sharmin
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Sharmin
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Kathy11

Re: Slow rate transfusion and warm antibody
« Reply #23 on: May 14, 2008, 12:02:16 AM »
HI Sharmin.

Thinking of you at this hard time. chin up, hopefully your child will get  better soon
To you :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers
Take care Kathy
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Offline Sharmin

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Re: Slow rate transfusion and warm antibody
« Reply #24 on: May 14, 2008, 01:41:46 AM »
Thank you Kathy,  your wishes warm my heart at this time:)
 :love :love :love

I hope that you also are well:)

Sharmin

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Sharmin
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Offline Andy Battaglia

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Re: Slow rate transfusion and warm antibody
« Reply #25 on: May 14, 2008, 02:10:14 AM »
Sharmin,

Can you also ask Dr Vichinsky if L-carnitine would be of any help in prolonging the life of red blood cells when there is an antibody reaction responsible for their early demise?
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Andy

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Offline Sharmin

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Re: Slow rate transfusion and warm antibody
« Reply #26 on: May 14, 2008, 02:41:10 AM »
I'll start making a list - these are all great questions. 
- Vit C containing foods
- L-Carnitine.

I have until the end of June before I leave for our trip if you think of more questions. 
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Sharmin
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Offline Zaini

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Re: Slow rate transfusion and warm antibody
« Reply #27 on: May 14, 2008, 04:59:30 PM »
What about resveratrol? Is he taking it? are you giving him wheat grass?

I'll pray everything will be back to normal,well,as normal as it can be for our kids ,so many hugs and kisses for maani  :hugfriend :hugfriend :hugfriend

ZAINI.
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Offline Sharmin

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Re: Slow rate transfusion and warm antibody
« Reply #28 on: May 14, 2008, 10:35:33 PM »
Thank you Zaini,
your wishes make a big difference.  The doctors are confident that this will get better, they are trying to determine the best way to do so.  Our doctor reassured me that things are not out of control and my son is not in any danger at this time - which makes me feel better.  We will do small weekly transfusions until things are better. 

Andy,  during our visit they will be doing the phenotype testing on my son as well.  I started him on wheat grass today - should I begin the resveratrol as well? 

Thanks everyone, love you all  :grouphug

Sharmin


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Offline §ãJ¡Ð ساجد

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Re: Slow rate transfusion and warm antibody
« Reply #29 on: May 15, 2008, 04:12:27 AM »
Hi Sharmin,

I'm glad that it's going better this way. This shows that we have to go beyond the books. Though I can feel the pain of your son going through weekly transfusions is in itself a great deal too. I know I felt like pulped out fruit when I knew that I will be getting bi monthly transfusions instead of monthly. I felt like my life got tied more tightly to the hospital from that day.

I hope your son's routine gets back to normal soon. Praying for his health :pray
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