Eight months from starting hydroxyurea

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Offline Manal

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Re: Eight months from starting hydroxyurea
« Reply #15 on: November 12, 2009, 04:41:14 PM »
Preety,

Actually the decision of taking iron pills should not be taken by the doctor unless a full iron studies are done. If these studies showed iron deficency, only in this case you will find that iron will be helping your body and will be also reflected on the hemoglobin. By taking iron in this case, you are correcting the iron deficiency anemia not the thalassemia trait.

If you didn't have iron defiecny, so these iron pills were wrong to take because they harm the body by being overloaded in the body organs (liver, heart, glands,...). Having a low hemoglobin too, adds to this problem because when the HB is low, iron is heavily absoarbed from food in the gut ( a way the body defend itself) . So you end up having iron absoarbed from the gut in addition to what is added from the pills. All this iron can be stored in the organ making them function improperly.  By the way, low ferritin does not show this iron overload in organs, it is seen only in scans.

As for the hypothyroidism, i observe that a lot of minors have a hypothyroid gland, i don't know if there are any studies done on this or not (you can hardly find studies on minors anyway)

Hope this helps, please feel free to ask anything :wink

manal


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Offline Zaini

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Re: Eight months from starting hydroxyurea
« Reply #16 on: November 12, 2009, 05:34:01 PM »
I understand your being worried but you'll be able to find a way to handle it.

And yes Manal, I am enjoying my day-- today I started translating Naguib Mahfouz. His book is "hadith al sabah oua al masaa" and as always there is a lot of arabic atmosphere in it. (although only non-Arabs can talk of arabic atmosphere and its magic--for the Arabs this atmosphere is part of their lives.)

Take care,

Lena.

Lena,

Are you translating it in English or in Greek?

Zaini.
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Offline Lena

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Re: Eight months from starting hydroxyurea
« Reply #17 on: November 12, 2009, 05:53:34 PM »
Hi Zaini,

I'm translating it from Arabic into Greek. This is the fourth book I translate into Greek and I hope there will be many more in the future. (the fifth has already been decided).

Lena.

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Offline Zaini

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Re: Eight months from starting hydroxyurea
« Reply #18 on: November 13, 2009, 05:02:33 PM »
Wow !! thats awesome Lena :hugfriend .

Zaini.
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Offline Keep Smiling

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Re: Eight months from starting hydroxyurea
« Reply #19 on: November 15, 2009, 12:20:55 PM »
hi Lena,
nice to know that u r translating Najeeb into Greek,

one of the books of Najeeb Mehfuz has been awarded a Noble Prize. will u plz tell me the book name?

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Offline Lena

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Re: Eight months from starting hydroxyurea
« Reply #20 on: November 15, 2009, 05:04:15 PM »
Keep Smiling,

http://nobelprize.org/nobel_prizes/literature/laureates/1988/press.html


in this address you can find the nobel prize release for Naguib Mahfouz.
It is not one book of his that won the Prize, it is for his entire work that he won the Nobel Prize for Literature.

Lena.

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Offline Keep Smiling

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Re: Eight months from starting hydroxyurea
« Reply #21 on: November 15, 2009, 05:12:15 PM »
Thanks Lena.................very much!!

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Offline Manal

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Re: Eight months from starting hydroxyurea
« Reply #22 on: December 02, 2009, 03:31:34 PM »
Yesterday i had a a visit at the doctor after i did a CBC. This CBC is done after 25 days from increasing the dose of hydrea. Nothing different than the previous one except that the Leucocytic count has decreased. We can not tell whether this decrease is because we increased the dose or because my son is having cough and runny nose (no fever), so another CBC will be done in two weeks. I observe too that the HB is same though the hematocrit has decreased. The new readings are in bold

Hb: 7..........now 6.9
Hematocrit: 23% (has increased) ....................decreased to 21.4%
Red cell count: 3.55...............................3.30
MCV: 65 (increased) ...............................65.1
Leucocytic count: 6,600..........................4,900
Platelets: 237000....................................231000
Biliruin: 1.8..............................................2

Reticulocyte count is now 3.2%

The bad news is that the spleen is 8cm enlarged, i am too concerned about this. I hope it will reduce a bit ( i know that cough help in enlarging it too and he has been having cough for a week now). I don't know why hydrea is not supressing the spleen, i get the feeling that it is not allowing the hydrea to work properly :huh :huh

The good news is that the doctor allowed me to do the ferriscan but again i wonder how i will convience my son to sit in a closed tube for 30 minutes alone without any single movement and with the sharp sound the machine emitts

Manal

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Offline Zaini

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Re: Eight months from starting hydroxyurea
« Reply #23 on: December 02, 2009, 05:53:28 PM »
Manal, :hugfriend

I really feel or you,i am sorry Ahmad's hb didn't increase this time,i hope it will next time.For Ferriscan ,you might need anesthesia ? I am afraid i can not think of any other way,i am sure we have members who have done ferriscan on young children,i hope they'll be able to tell you about their experience.

Zaini.
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Offline Sharmin

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Re: Eight months from starting hydroxyurea
« Reply #24 on: December 02, 2009, 07:00:30 PM »
Manal,

I hope that Ahmad's spleen decreases in size soon, an enlarged spleen can certainly bring down the hemoglobin.  It would be nice if his hg would increase so that it is closer to 80.  

The ferriscan should not be too bad if you prepare him.  Lil A has had numerous MRIs and they are not too bad.  If you make it like a game, he may be happy to cooperate and not move.  He will receive earmuffs to reduce the sound.  I usually sit in a chair next to the machine (with earmuffs on as well).  The technician is usually very good about talking to the child while he is in the machine.  

The technician will have him lay down on a bed and then slowly move him back until some of his upper body in the machine.  The child can communicate with the technician the entire time and they can let them know if they are uncomfortable.  He should not feel claustrophic because the machine won't be tight.  Perhaps you can tell him that it is like being in a space ship and that he should be really still the whole time so that they can get pictures of his insides.  

I hope this helps.  

Always thinking of you and praying for your family,

Sharmin

« Last Edit: December 03, 2009, 01:08:47 AM by Sharmin »
Sharmin

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Offline Bostonian_04

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Re: Eight months from starting hydroxyurea
« Reply #25 on: December 02, 2009, 09:13:50 PM »
Hi Manal,

Is transfusion an option for Ahmad? In general regular transfusion keeps spleen normal. ALso as close to normal Hgb gives immunity against cold and cough , I think. I hope the hydrea increases his Hgb when the cough goes away. Wishing the best for Ahmad...
Quis custodiet ipsos custodes ? - Plato

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Offline Manal

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Re: Eight months from starting hydroxyurea
« Reply #26 on: December 04, 2009, 03:22:50 AM »
Zaini,
Thanks dear for your wishes :hugfriend, i hope it goes well

Sharmin
What you say, is what i am doing now. Actually i am trainig him now to sleep on his bed with no movement at all and i do the timing, he is taking it as a game and interested in seeing the pictures of his tummy. I will keep on tlking about it in that way. Thanks dear for the illustration and the advices, they really help :hugfriend.

Bostonian,
Thanks my friend for your concern :hugfriend. Actually transfusion (as agreed by the hematologist ) will be an option if the growth is hindered or below the normal range.
I agree with you about the high HB = high immunity off course and i hope too that the hydrea will start showing in the coming months

I will do the ferriscan as soon as the cough is gone, so he wouldn't need to cough inside the machine

Manal

 

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