Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: Mompooja on June 23, 2013, 03:14:23 PM
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Hi Andy,
We started hydrea when my daughter Hb was 8.1. in Feb. Her hb went to 8.4 in March. Her spleen went from 9cms to 8cms.... However her bloated stomach reduced. But she fell ill fever then upset stomach then cild then fever again. Her Hb went to 7.2 spleen also went to 9cms n her stomach bloated again. Doc increased her dose of hydrea slightly. But she said that if her Hb doesn't improve then she may require transfusion. What I want to know. How soon should the spleen reduce and how miuch to know if hydrea is working. My daughter has fever again. No illness just temperation higher than normal. I want to know if she is falling sick repeatedly becoz of low Hb (wbc has fallen but is normal). She complains of pain in legs does that imply anything( physical activity not very high). What can I do so that she doesn't fall ill n her Hb may increase with hydrea
Pls help
Pooja
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Hi Pooja,
The fever could also be a aside effect of hydrea. The leg pain could be related to low Hb, could be a lack of exercise or could be growing pains. Do you know if her HbF percentage has risen while using hydrea?
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Andy her HbF was 93% when we started so the doc never bothered to check if there is any increase
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Hi
how old is your daughter. I started HU when my son was 3.5yrs, that time his HB increased from 8.3 to 9.1.
Rt now my son is 7 yrs old and Hb is around 7.
He has been transfused 2 yrs back due to high fever and HB drop to 6.1
So it may be the recent illness which is affecting the Hb. But as the child will grow the tendency of Hb may reduce.
Rgds
Dip
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Hi Dip, My daughter is 3.5. I did not understant " as they grow old the tendency of Hb reduces". Thanx Pooja
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I have been told by some specialist that as the child will grow, the condition (size) of the speen become more worse which may cause some negative effect on Hb and as the child grow (child to young stage)the break down of red shell will be faster because of growth and development.
If anybody can through more ligth is appreciated
Rgds
Dip
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Hi
You mentioned that your sons hb rose from 8 to 9 by using HU. How long did it take to get this increase.
Thanks in advance.
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I have been told by some specialist that as the child will grow, the condition (size) of the speen become more worse which may cause some negative effect on Hb and as the child grow (child to young stage)the break down of red shell will be faster because of growth and development.
If anybody can through more ligth is appreciated
Rgds
Dip
Ya it happens when sufficient care has not been taken.
Like some children even do not take F.Acid.
Till the Hb kept >9gm/dL before bt with taking required medicines, spleen do not matter.
I am 28 and have spleen though it is huge.
This is for those who r on bt BUT
when hydrea comes into picture , there is different protocol of low hb. So again u have to view from different aspect. Ask ur hemato about it and of course Andy.
Hope it help.
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hi Dharmesh,
My son is E-beta thal (non transfused) He is 7 yrs old but while discussing with his doctor in gangaram he told that my son may need regular blood in later stage. Then I asked why.
He explain the effect of spleen that may reduce Hb.
rgds
Dip
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Hi Dipankar,
there is one post on thalpal FB page. the child's transfusions stopped after the splenectomy.
might be due to intermedia or else.
so do not worry for future
if hydrea is working hb will rise to normal or around 10, so spleen will not be issue :biggrin
All the best
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My son also has been taking HU for last six months. But still needs transfusion every 2-3 months. But her spleen has reduced, eye color became whiter. Doc says to wait at least one year before significant improvement in the HB level.
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Spleen size reduction and loss of yellow in the eyes shows that HU has reduced the amount of ineffective erythropoiesis, so there are fewer RBC's being eliminated by the spleen and less production of bilirubin. These are benefits of HU outside HbF production.
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Hi Andy,, its been a while since I wrote in. We started my daughter on hydrea about a year back. Her hb kept fallingevery time she fell ill and then rose up again after a week or so. But at the end the year we chked her hb and it was 8.2 which is the level at which we started. (8.1 march 2013). The current status is that her spleen is at about 8 to 9 cm enlarged, not enlarged or reduced further over the last year her hb though not increased has not fallen either it has been at 8 for a year. According to the doctor hydroxyurea hasnt really worked as her hb has not increased over 1 year. Though she does not recommend toput her on transfusion yet(especially considering lack of good blood availability in India). Pls advise.
Thank you in advance
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Dear Mompooja,
Whether ur daughter is taking Wheatgrass?
Further would u please tell me before hydrea, was ur daughter given transfusion? Means does the transfusion stopped completely?
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Hi, no my daughter is not taking wheatgrassm nd no she has never been trnsfused. We were hoping that with hydrea she may not require it. But now we may have to cnsider it. Or is hb of 8 ok. That was my question.
Thank u
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Without transfusin maintaining hb 8gms% is ok.
But Wheatgrass is utmost important here. and u will know that it is raising hb or not, only after u give it to ur daughter for 6-12 months..
I think it is must for her