help Aysel

hello dear
forgive me for my English, I don't know English, unfortunately.
I am a mother, my name is Jamala. my daughter is sick a thalassemia - a beta, an intermediate form.
such diagnosis to us was made by doctors in Russia the city of Moscow. Longly doctors that at my child couldn't understand. The diagnosis was made in 2013.
5 years surveyed in the different cities ((((
I saw your site recently (((
how many here people... same as we...
we from Russia... city of Krasnoyarsk... here we only with illness a thalassemia (((and doctors sometimes have no experience of maintaining such patients ((((
your magnificent site and that that you write here, translates me google, and I try to understand about what you correspond)))
it is sometimes difficult to me to understand something, but I consult)))
simply I mother, I need to salvage the child...
I ask all of you, my dear, to help me with thalassemia questions.... I will write all of you here in my subject... please I ask to answer me.... thank you, for that that you are.... thank you for your site, we wish you in New year only health!!!
yours faithfully Jamala and my daughter Aysel.

Dear Jamala,

Welcome to thalpal, we are happy to have you here.  Treatment of thalassemia has progressed greatly, and with proper treatment your daughter should be healthy and she should thrive.  Please let us know what questions we can answer.

Please also let us know about how your daughter is doing - including her blood test results and most recent hemoglobin.

We are all happy to help you,

Sharmin

Hi Jamala,

We have communicated previously by email. Has Drago contacted you? I hope he has given you the contact information for help in Russia.

Andy's thanks.
Yes, Dragomir answered me.
About contacts I didn't write yet. I hope with it we will correspond

Friends if it is possible correct me, what we do not correctly??? tell us, correct us.
thank you
 Before I incidentally found your site, doctors didn't tell me what additives and vitamins it is necessary to drink my daughter (((
it is sad and it is a shame to me with local doctors....
I read not all your forum yet, there is a lot of information, but over time I hope I will read and I will understand)))
On the site IHerb we ordered IP 6 gold, according to your references. Only I don't know so far as well as how many capsules to give in day???
We accept Acidum folicum 2 pill a day.
Exsjade we accept 500 mg a day.
What is necessary my daughter can accept??? from vitamins, bioadditives.
I will order on the site iherb  as in Russia there are no many normal vitamins (((
forgive if I ask silly questions....

Друзья, это моя дочь и я Айсель Джамал. Приятно познакомиться

Hello dear Andy and Sharmin. Thanks for your answers. Forgive that I answer late. New year and holidays, time wasn't to arrive here. You give me hope. Thanks. At a forum we want to wish all happy New Year!!! and to wish all of you only a good health! (still to forgive me for my English, I write to Google by means of the translator):

She can accept 1-2 capsules IP6 daily at this age.
She should accept a supplement with calcium, magnesium and zinc. She should accept vitamin D and natural vitamin E.

What is her weight? The Exjade dose is based on the weight of the patient.

Your questions are necessary. We will try to help you.

Your daughter is beautiful. 

thanks, Andy
ip6 gold to accept 2 capsules a day,
vitamin D to accept 2 drops a day (1 drop =500 ME vitamins D),
Acidum folicum of 2 tablets,
vitamin E 1 capsule (1 capsule contains 400mg an acetate alpha tocopherol),
exsjade of 500 mg,
how many it is necessary a calcium? how many magnesium? what additives you still recommend? 
ip6  gold a magnesium and a calcium contains or I not correctly understand the maintenance of an ip6 gold???

it is bad not to know English
I hope to learn your language... thank you for patience 

Aysel
weight 23
body height 125
9 years

Friends, at Aysel found a tumor on a backbone, operation on an oncotomy is necessary to it!!! 
doctors think, what it is the hemopoiesis centers?
you had such tumors???

Dear Jamala,

Aysel is a beautiful girl just like her mommy. 

I am not an expert on the subject, however I wonder if the growth on her spine is due to ineffective hematopoiesis, meaning that her marrow is working hard to produce hemoglobin.  As the marrow is unable to do this effectively, it is trying to increase its surface area to create more hemoglobin. 

My prayers and best wishes are with your lovely daughter and your family.  Wishing your daughter good health.

Sharmin 

dear Sharmin, thank you for your wishes!
 Your words give us forces!
You maybe not the expert, but understand illness a thalassemia better than the Russian doctors from Krasnoyarsk.
 Aysel 4 years every month transfuse a blood (((but when we go to transfuse a blood at my daughter a hemoglobin lower than 90 ((((, we are one such patients in this city and experience and doctors have no desire to study (((
 Yatozhe not the expert, but I understand that the organism Aysel works with a load and it isn't surprising that there were such tumors.

Dear, Sharmin, I corresponded with the medical coordinator from Italy,
here that he advises me...

....Beverley (in Cc), our central office manager, will be in touch with you for HLA typing kits.

Given the relatively big spleen and high ferritin I would suggest to start hydroxyurea, we have seen both spleen shrinking and ferritin reduction with this very tolerable and inexpensive therapy. We will be happy to follow your daughter together with your doctor....

how you think, what for medicine and you give it to the son??? forgive for questions how you support health of the son? thanks, Sharmin that you are! Health to your son! We for it will pray!

Unless the mass is pressing on the spine and posing a danger, it is best not to do surgery. Hydroxyurea might help. What helps most is raising the Hb level. The child should be transfused to a higher level. This will also decrease the size of the spleen. The doctors in Los Angeles now keep patients at Hb >11 when this occurs. They say that high Hb is the best treatment to shrink the masses.

She can be on an Exjade dose of about 700 mg/day. Can you get smaller tabs than 500 mg?