NEW HERE

Hello every one

I am Harminder I have just registered; I am here for my 7 yrs old daughter Priya who is thal intermediate.

We are from India but we live in Mexico and Priya born here. from birth she was quite good till 4 yrs. after that she started with frequent throat infection,  had less appetite and she started looking pale so we took her to her child specialist and he told us to do her CBC and we found that her HB was 8.3mg at that time and Dr. told that she is anemic and started giving her iron medicine and we gave her lots of iron “everything rich in iron” but she didn’t improved and when we went to India in 2005 we  find that she is thal intermediate. And from that she is taking hydra with a gap of one month after taking 2 month continuously and she is maintaining her Hb 7.2 mg to 7.8mg.

And let me tell you that in august 2007 we were in India and she dropped her Hb to 5.8mg may be because of exertion and climate change. Now she is on Hydrea for six month continuously with Recormon 5000 IU which she has to take one every week for 3 months. We did her CBC on 23 Sept. and she has 7.2 HB.

Let me tell you one more thing that it’s really difficult for us to find good Thal Dr. because I think this problem doesn’t exist in Mexico.
I will really appreciate if any body can help us finding good Hematologist with experience in treating thal patients.

Thanks

Harminder.

I do hope you have discontinued the iron med. It can only add to the problems as iron overload in non transfusing intermedias can be a major problem.

welcome here and hope you find a good hema.in india
          khalifa

Yes Dr. Andy, the day we came to know that Priya is thal intermediate, we stop giving here any type of iron med., or even in food also we keep strict watch, we did her ferritin test in august and it was 414.
But I really have problem while giving her fruit, vegetables and legumes.

Thanks A lot

Harminder

Dear harminder

My son Prat has the same problem, he is 7 years old and is on Hydrea. You can  email me or message me here for any infoirmation needed.

Thanks

Puja

Hi Puja

I am really thankful to you.
I Hope Part is doing great.
Let me tell you that Priya takes Hydrea daily and Recormon 5000 UI weekly and off course her wheatgrass juice and we just had her CBC  on 21 oct. and Thanks to GOD her HB has been raised from 7.2 to 8.3.

I will really appreciate if you can tell me how you son is doing, I HOPE HE IS DOING GREAT. How much HB he is maintaining and what amount of hydrea he is taking and from how much long time and if he is taking some other medicine or vitamin supplement.

Wish you good luck and Happiness.
 

Harminder

Dear Harmnider,

Thanks for your reply. As for Prat, he has been on hydrea since Nov 12, 2002. he was given 2-3 capsules initally and it was increased as the weight grew. At the moment he istaking 9 per week. With the help of hydrea his transfusion has been only 2 till about early this year and his hb was maintained at 7.5. however due to viral infection this year, he had to be given 2 more transfusions this year 1 in May and another 1 in Sept. Still he hasnt recovered fully, his hb level is about 5 now. So we are considering various options right now.

I would like to know u have mentioned RECOMORON - pls advise wht is this, as i am not aware of it. Also the injection which u hv mentioned. kindly let me know wht these are.

As for prat i give him folic acid and a multi vitamin syrup(without iron). Also we give him wheat grass tablets.

Will look forward to your reply, incase you would like to chat with me on MSN, please feel free to message me on poogill@hotmail.com

Regards

puja

PS: I could not make out wether you are a Mummy or a Daddy.

Hi Puja

I am Priya´s Mom. Actully with sikh name you cant find whether its a girl or a boy name. 

Its the RECORMON injection. Is actually a hormone that stimulates the production of RBC. And in some case of thal intermediate it is helpful.
You can find more on following sites
 www.roche.co.nz/products/medicine/14
 www.virtualcancercentre.com/drugs.asp?drugid=3212&type=

I think you can ask Prat Hemo about this and hope it will help him
and let me tell you that i came to know about L-CARNITINE which you can check in following link.

http://www.thalassemiapatientsandfriends.com/index.php?topic=1077.0

One thing more puja which i want to ask you whether your son has some bone deformation in his skull or face. Pls. write me about this

Pls. Keep me update about Prat.

Regards

Harminder

Dear GOD!!!!

I also thought you were Priya's dad 

ZAINI.

Dear Harminder

Is it possible for you to give me your number or MSn address so tht I  chat with u. 

I need your advice on the following matter, how long have u been using Recomoron and L carinitine.? Any side effects?
How long u hv been using Hydrea. ?

As for prat , he doesnt hv much facial changes. His nose bone is a bit flat though.

Tk care puja

Hi Puja

My phone no. is 00525596141919 & I dont have msn account, but i do have my yahoo acct. which  is  kaurharminder@yahoo.com.

You can call me any time.

I will be very glad if in anyway i can help you.

Zaini :I am thinking, i should use me nick name DIMPLE.

Bye

Take Care.

Herminder,

It's ok,    ,now we know you are Priya's mom 

ZAINI.

Hello Dimple

I tried calling you many times at my 10 pm my time, but was not able to get thru to u.


Could u advise how to dial from S'pore.

Thanks

Puja

Hi Puja,

I think you need to drop the 00 and add following IDD code for the different network that you are using:

001 - Singtel IDD
002 - MobileOne IDD
008 - Starhub IDD

eg : 001-52-5596141919

I hope you get through.

I AM SO  SOOOOOOORRY PUJA,
Pls. Correct my nu. 0052 55 36141919.

AND STILL IT YOU DONT GET THROUGH; THEN YOU CAN TRY AS SAJID MENTIONED.
BUT I DONT THINK YOU SHOULD GET ANY PROBLEM,BECAOUSE FROM INDIA THE SAME CODE IS USED.

REGARDS

DIMPLE