help Aysel

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Offline djema

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Re: help Aysel
« Reply #15 on: January 11, 2015, 06:12:45 PM »
Andy, I ask you, pay attention to us!
Operation is prescribed to January!!! At it presses pains, a tumor on a backbone and causes pains! It occurs attacks! Usually in the evenings!
I understood from your report that if we will transfuse a blood when a hemoglobin is 110 and to raise it to norm, and it has to be constant. Lower than 110 it is impossible!!!
And then over time the tumor will become less????
Write please as it is correct to conduct treatment! How to accept a gidromoschevin???? ???

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Offline Andy Battaglia

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Re: help Aysel
« Reply #16 on: January 12, 2015, 03:58:44 PM »
Yes, this is treated by raising the Hb above 11.

But, if the pressure from the mass is a danger to the child's spine, then surgery may be needed.
Andy

All we are saying is give thals a chance.

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Offline djema

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Re: help Aysel
« Reply #17 on: January 13, 2015, 07:31:53 AM »
spasibo Andy :smiley

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Offline djema

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Re: help Aysel
« Reply #18 on: February 19, 2015, 06:17:54 PM »
Hello, dear friends  :getwell  Aysel says hello to all of you We decided not to delete Aysel of a tumor and talked to doctors that supported hemoglobin 100. On a gidroksmochevina to us don't write out the prescription, in Russia at a thalassemia don't accept a gidroksmochevina.... ridiculously... and there is a wish to cry... We will go to Moscow, to Depertament of health care to fight for a gidroksmochevina)))) Now we have only a problem with knees and sometimes the loin hurts. I ask you, advise, what are you doing at knee, feet pains, a loin????  thank you that you with us also forgive me my English)))

last analyses Aysel (((ferritin still highly

-11/02/2015
ESR - 5
HGB- 100
RBC -3.6
WBC -5.9
banded neutrophile - 1%
segmented neutrophile - 48%
EO -2%
BA -2%
LYM- 41%
MON -6%
PLT - 200
normoblast - 2
reticulocyte - 11
LDH - 239
ALT -18
AST -25
creatinine - 42.8
Fe -23.1
total bilirubin -56.5
direct bilirubin -13.7
glucose - 4.82
Na+ - 140
K+ - 4.3
alkaline phosphatase - 140
ferritin - 2368
                         Aysel   weight 25th ,body height 125.
« Last Edit: February 19, 2015, 06:30:35 PM by djema »

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Offline djema

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Re: help Aysel
« Reply #19 on: February 19, 2015, 07:03:24 PM »
please, friends, whether look correctly we accept additives.... share the knowledge... it will help us to support health Aysel
  Silymarin Milk Thistle Extract 150 mg - 1 capsule
  Omega -3 Premium Fish Oil - 1 capsule
  IP6 Gold (I learned on this site :thumbup)  -2 capsuls
 Folid acid - 2 tab
 Exjade deferasirox - 1 tab =500mg
 Yummi bears multi-vitamin & mineral (I learned on this site :bighug) - 2 bears
still I ordered vitamy E and sprouts of wheat on IHERB
please advise us if that I do not so.
thank you that you are))) health to all of you :grouphug

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Offline Andy Battaglia

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Re: help Aysel
« Reply #20 on: February 19, 2015, 07:32:29 PM »
Can you explain "gidroksmochevina." I do not know this word.
Andy

All we are saying is give thals a chance.

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Offline djema

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Re: help Aysel
« Reply #21 on: February 20, 2015, 04:28:37 AM »
hello, Andy.
 hydroxyurea :dunno

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Offline Andy Battaglia

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Re: help Aysel
« Reply #22 on: February 21, 2015, 05:42:03 PM »
Djema,

These are not really tumors. These are masses of red blood cells called extramedullary hematopoiesis. The best treatment is to keep the hemoglobin level high. It should always be above 10-11, so that the growth of the masses is repressed. Hydroxyurea has had only limited success and is not the best treatment. More blood is the answer.
Andy

All we are saying is give thals a chance.

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Offline djema

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Re: help Aysel
« Reply #23 on: March 01, 2015, 07:29:37 PM »
thanks dear Andy, you aren't tired to help us.

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Offline Pratik

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Re: help Aysel
« Reply #24 on: March 02, 2015, 09:48:58 AM »
Djema,

The supplements you ordered are already excellent! IP6, Calcium/Magnesium, Vitamin E, D, Milk Thistle are all great supplements & vitamins and will benefit your little girl!

And please, you do not need to apologize in every post about your English. We are a community and are there to help each other. This is not an English school so don't worry. That's what seperates thal kids, their parents and this community from the people of this world. We show compassion, love and sympathy to each other over here. :)

It is great that tools like Google Translate are available in today's time through which we can all communicate to each other no matter whatever language we speak!

Regards,

P.
Every child is special.

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Offline djema

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Re: help Aysel
« Reply #25 on: March 07, 2015, 12:27:19 PM »
hello, our dear friends!  :grouphug
thank you for your support.
all of you are good fellows, because you together, you force.
we about Aysel are glad that we part you!
thank you Patrick for your words. :smiley

 

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