Update on Olivia

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Offline olivia mary

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Update on Olivia
« on: May 09, 2008, 05:46:46 PM »
Hi all,

Just wanted to give an update on Olivia. She has been on the Hydroxyurea 2ml for some time now. Her hb has been between 8-8.3 her spleen has been normal she is growing and developing normally and she has been very healthy too. I cannnot remember the last time we were at the drs for an illness. (thank God).  We just had her appoinment yesterday and her hb was 7.6  her retic was 4.3 and there appears to be no real reason for the drop....her dr has in the past said that we can raise her meds but that is not something that we are comfortable with because this means blood tests every two weeks and more risks now and possibly long term so we have to go back next week for a re-check and if there is no change in her numbers then we will discuss transfusions........I hope everyone in doing well and God bless


Love  Kathleen : :hugfriend

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Offline Andy Battaglia

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Re: Update on Olivia
« Reply #1 on: May 09, 2008, 05:57:04 PM »
Hi Kathleen,

Overall it sounds as though Olivia is doing quite well.  :biggrin  I wouldn't worry too much about the minor drop in Hb. Various factors such as hydration and the time of year/temperature can affect Hb levels. One suggestion, if the Hb does drop, you might want to try adding wheatgrass extract and/or resveratrol as supplements, as they do add to the total Hb in some patients.

And, have a very Happy Mother's Day!  :flowers
Andy

All we are saying is give thals a chance.

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Offline olivia mary

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Re: Update on Olivia
« Reply #2 on: May 10, 2008, 12:20:25 AM »
Thanks for the info ! And thank you for the Happy Mother's day

alos I asked the dr if once olivia is transfused will she stop making her own hb will her marrow shut off? the dr said no. can you tell me anything about this?

Thanks kATHLEEN
« Last Edit: May 10, 2008, 12:27:28 AM by olivia mary »

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Offline Andy Battaglia

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Re: Update on Olivia
« Reply #3 on: May 10, 2008, 04:16:59 AM »
Bone marrow activity is directly related to hematocrit or hemoglobin level (hematocrit being roughly 3 times Hb level). To completely suppress bone marrow activity, the hematocrit has to be kept above 35%. This isn't practical because of the amount of iron that is introduced from taking so much blood, so the Hb is kept lower, with the pre-transfusion Hb in the 9-10 range. At this level, the attempted red cell production is still 2-3 times normal.

When intermedias do become transfusion dependent, they normally do not transfuse as frequently as majors. Since intermedias do produce some useful red cells, transfusion should be seen as a supplement and not a total replacement, as it is with major. One strategy is to induce fetal hemoglobin with hydroxyurea or other drugs, as is being done with Olivia, and taking an occasional transfusion when needed, because Hb has dropped temporarily, often due to illness. Occasional transfusions will do little to suppress bone marrow activity. My opinion is that transfusion should be avoided if possible. That depends on the long term success of the hydroxyurea and whatever new drugs come along, which is a matter of when and not if.
Andy

All we are saying is give thals a chance.

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Offline olivia mary

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Re: Update on Olivia
« Reply #4 on: May 16, 2008, 11:25:45 PM »
Hi everyone....
I hope everyone is well
Just wanted to let you know that Livi had her appt yesterday and her hb is 7.8. It has gone up a little and it is not much lower that her normal...she does have a virus now  :sick so this could be the reason why she dropped.
Also I wanted to know if anyone could tell me anything about wheatgrass  I would like try it with Livi
Thank you
Have a great weekend
Love Kathleen

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Offline Andy Battaglia

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Re: Update on Olivia
« Reply #5 on: May 17, 2008, 12:19:21 AM »
Hi Kathleen,

The easiest form of wheatgrass to use are the wheatgrass shots. It's a small amount, half a cap full daily for a child. Swish it around the mouth for a minute or two and swallow.  For a child her age, it may be the only way to get her to take it. I think tablets would probably be too hard for her to take at this age.

I've been buying it in the US from http://www.grassfactor.com/products.htm

Studies have shown that it takes a full year to see all the results so be patient.
Andy

All we are saying is give thals a chance.

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Offline maha

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Re: Update on Olivia
« Reply #6 on: May 17, 2008, 08:05:40 AM »
Hi Andy
Retaining the supershots in the mouth for a minute is just impossible for my 2 year old. Probably he would have been able to retain it if the supershots were unpalatable. But they taste great and he does the swishing action after he has swallowed it. Does this means Hassan will not benifit from it as he is not following the instructions.
Maha

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Offline Andy Battaglia

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Re: Update on Olivia
« Reply #7 on: May 17, 2008, 05:04:52 PM »
Hi Maha,

Wheatgrass shots are easily absorbed by the veins in the mouth so it helps maximize the absorption if you swish it around a bit before swallowing. The shot still has effect after swallowing but try to get him to swish it a bit first. Tell him to swish like when he's rinsing his mouth after brushing his teeth but swallow it and don't spit it out. You might even invent a little game where you swish a bit of water and he swish the WG and see who can do it longer. When he has done it long enough, swallow yours so he wins.  :biggrin
Andy

All we are saying is give thals a chance.

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Offline Zaini

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Re: Update on Olivia
« Reply #8 on: May 18, 2008, 11:09:05 AM »
WOW Andy  :rotfl :rotfl :rotfl

ZAINI.
^*^Xaini^*^

 

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