Thalassemia Patients and Friends

Discussion Forums => Announcements => Topic started by: Hafiz Akhtar on December 19, 2014, 05:06:19 AM



Title: increase of Transfusional needs
Post by: Hafiz Akhtar on December 19, 2014, 05:06:19 AM
Dear Andy, my son 10 yrs old thal major with 2000 ferritin, 4cm spleen & liver enlargement. his transfusion gap since fiour months has been reduced. now his hb reduced to  8. hb after every 15 days. Cenathous tincture is being given to him. what should i do. how to imrove his trsfusional gap.


Title: Re: increase of Transfusional needs
Post by: Andy on December 20, 2014, 07:35:17 PM
How high is his Hb after transfusion?


Title: Re: increase of Transfusional needs
Post by: Hafiz Akhtar on December 22, 2014, 06:02:48 AM
thanks for response Andy. after transfusion of full bag of pack cells max 2 & half points raises dear.


Title: Re: increase of Transfusional needs
Post by: nice friend on January 23, 2015, 12:47:28 PM
Hafiz,
wats his weight ?? ...


Title: Re: increase of Transfusional needs
Post by: Hafiz Akhtar on January 26, 2015, 07:24:40 AM
thks dear. his weight is 26 kg.


Title: Re: increase of Transfusional needs
Post by: Hafiz Akhtar on January 28, 2015, 08:36:17 AM
dear Andy. may i start Hydroxy urea to my son. he has Del619 mutation from mother & Cap +1 from father. HU respond these mutations or otherwise. thaks.


Title: Re: increase of Transfusional needs
Post by: Andy on January 28, 2015, 11:09:11 PM
Hafiz,

I would suggest at least a 6 month trial of hydroxyurea, but only under a doctor's supervision. If your child does start, please add wheatgrass tablets also, as this has been shown to improve the results of hydroxyurea. Dr Vijay Ramanan of Pune, India has had good success with this combination. Some of his patients no longer require transfusion after this therapy.


Title: Re: increase of Transfusional needs
Post by: Hafiz Akhtar on January 29, 2015, 06:57:03 AM
thanks Andy. i live in Pakistan, from where i can take wheatgrass. pl give me the links.


Title: Re: increase of Transfusional needs
Post by: nice friend on January 31, 2015, 11:16:51 AM
Hafiz,
u can buy wheatgrass from any GNC store ...  here is the list of the GNC stores within pakistan ..

KOHINOOR ONE
JARANWALA ROAD
FAISALABAD, 00000
(041)850164
Get Map Get Directions
 
CENTAURUS SHOPPING MALL
F-8 JINNAH AVENUE
ISLAMABAD, 00000
( 0) 0- 0
Get Map Get Directions
 
SUPER MARKET ISLAMABAD
F-6 MARKAZ
SCHOOL ROAD
ISLAMABAD, 00000
(051)2277830-1
Get Map Get Directions
 
ZAMZAMA KARACHI
8TH COMMERCIAL LANE
ZAMZAMA DHA PHASE V
KARACHI, 00000
213 5302 0012
Get Map Get Directions

SHAPES HEALTH STUDIO
GULBERG-III
LAHORE, 00000
042-5775140
Get Map Get Directions
 
M.M. ALAM ROAD
125 UPPER MALL
LAHORE, 00000
423 5785 3801
Get Map Get Directions
 
DHA LAHORE
212 Y PHASE 3 DHA COMMERC
LAHORE, 00000
042 3574 9556
Get Map Get Directions


Title: Re: increase of Transfusional needs
Post by: Hafiz Akhtar on February 02, 2015, 06:48:40 AM
thanks dear. i will manage now.


Title: Re: increase of Transfusional needs
Post by: nice friend on February 04, 2015, 02:33:32 PM
u r always welcome hafiz bhai :) ..


Title: Re: increase of Transfusional needs
Post by: Hafiz Akhtar on February 11, 2015, 06:03:44 AM
dear i have obtained wheat grass. what would be its method to administer . currently i am giving him Oderox 500 (Cipla Company) single tab daily along with Evion 200, Calcium P syp. indrop D one inj monthly.


Title: Re: increase of Transfusional needs
Post by: Andy on February 12, 2015, 06:10:03 PM
Which form of wheatgrass did you get?


Title: Re: increase of Transfusional needs
Post by: Hafiz Akhtar on February 16, 2015, 05:04:39 AM
GNC Super Foods Wheat Grass (Pittars burg). surprisingly it also contains iron. its very costly. i obtained one pack for Rs.4500- (45 dollars). should i continue 4 my son


Title: Re: increase of Transfusional needs
Post by: jay on February 16, 2015, 09:54:10 AM
woow that's quite a lot of money, booom. With that kind of money I can rent one hector of farm land in Pakistan  :mouthshut


Title: Re: increase of Transfusional needs
Post by: jay on February 16, 2015, 03:49:26 PM
Hafiz Akhtar,
There must be local fresh wheatgrass manufacturers, In India it costs one tenth of price you mentioned, If you don't get it their then you may request to send it to Thal brothers and sister's from India.


Title: Re: increase of Transfusional needs
Post by: Hafiz Akhtar on February 24, 2015, 07:33:54 AM
dear Andy waiting for reply about wheatgrass


Title: Re: increase of Transfusional needs
Post by: Andy on February 24, 2015, 09:27:39 PM
Hafiz, food contains iron. You can't starve children to avoid the small amounts of iron in food. If a child transfuses, 200-250 mg of iron is in every unit, so there is no reason to be concerned about getting a few mg of iron in foods.


Title: Re: increase of Transfusional needs
Post by: Hafiz Akhtar on February 25, 2015, 05:40:42 AM
thks Jay & Andy.


Title: Re: increase of Transfusional needs
Post by: Hafiz Akhtar on March 05, 2015, 06:52:19 AM
hi jay.
thanks 4 ur response. is there wheatgrass juice  not powder, available in India. if yes, what is its price.


Title: Re: increase of Transfusional needs
Post by: jay on March 11, 2015, 07:44:47 AM
Hello Hafiz, few years back it use to cost 10 Indian rupee for 100ml considering inflation it could have gone up to 20 to 25 rupee. Now days there are many of those roadside stores serve them but I don't live in Pune anymore.There was 200ml pouch as well use cost little less. For my baby I tried it from my own farm but he did not respond to hydroxiure


Title: Re: increase of Transfusional needs
Post by: Hafiz Akhtar on March 12, 2015, 05:32:34 AM
thanks Jay.
i am feeling that when my son 10 yrs old Thal major gets up early in the morning there is  some sweeling appears around the upper side of nose near eyes. why is it so. his ferritin 2000. transfused after every 15 days. 


Title: Re: increase of Transfusional needs
Post by: Lokkhi maa on April 29, 2015, 06:09:25 AM

Wheatgrass tablet and capsules are available in India and Pakitan but why not in Bangladesh?  ??? ??? ???


Title: Re: increase of Transfusional needs
Post by: Hafiz Akhtar on May 28, 2015, 06:53:39 AM
hi Andy, somebody told me that he is  giving his son a homeopathic medicine. his ferritin was 2400 b4 the medicine but after use of homeo medicine  it reduced to 700. its amazing. he got it tested from one of the reputed Clinical Lab (Agha khan Lab). is it possible. can homeo medince effect a lot.
pl share the experience if anyone has undergone it.


Title: Re: increase of Transfusional needs
Post by: Andy on May 29, 2015, 12:03:33 AM
Hafiz,

It really depends on what's in the preparation. There are many natural substances that chelate iron and many that inhibit absorption of iron and inhibit the effects of iron on cells. If the preparation works, keep using it and please report back again with future results. I am very interested in all natural methods that will reduce iron load and would like to hear more fromk you as time passes. Ferritin is not a very good measure of iron, but repeated results in the same range will show that progress has been made.


Title: Re: increase of Transfusional needs
Post by: Hafiz Akhtar on May 31, 2015, 11:18:13 AM
thanks. sure i will keep u up dated. when the patient should repeat the ferritin, pl suggest.


Title: Re: increase of Transfusional needs
Post by: Andy on May 31, 2015, 10:14:12 PM
If you can get the ferritin checked monthly, it would be best.


Title: Re: increase of Transfusional needs
Post by: Hafiz Akhtar on July 22, 2015, 08:20:35 AM
Dear Andy, i have got tested the ferritin after 2 months. the report is 3000. however i ve seen some considerable changes in the patient. his colour is not as pale as before. his spleen & liver reduced to size after ultrasound report. when i asked the homeo physician about again rise of ferritin from 700- to 3000- he replied that ferritin from spleen & liver is being removed & entering in the serum. thats why the ferritin has been increased. his reply seems justified bcs spleen size is decreased up to 1 cm as before after use of medicine. what u suggest? should the medicine be continued? is there any other test to check exact ferritin? 


Title: Re: increase of Transfusional needs
Post by: Andy on July 23, 2015, 10:38:16 PM
Ferritin is not a very good test for iron level. MRI scans of the liver and heart are done to determine the true iron level. Because natural chelators are being used and there is no way to know how well they are working, at some point, a liver MRI should be done to check the iron load in the liver. If the skin tone of a patient lightens, it is a sign that iron is being removed. If MRI is unavailable at this time, continue to monitor the ferritin and the overall health of the patient. You don't want to go too long without verifying that enough iron is being removed to keep the patient safe, so at some point, the MRI does need to be done.


Title: Re: increase of Transfusional needs
Post by: Hafiz Akhtar on December 07, 2015, 07:22:57 AM
Dear Jay, can u send me wheat grass tab. pl tell me its price so that i may send u the amount.


Title: Re: increase of Transfusional needs
Post by: nice friend on January 14, 2016, 04:11:44 PM
thks dear. his weight is 26 kg.
Hafiz Akhtar,
if i m not worng then, your son can be transfused upto 396ml of blood every month according to 15ml/kg calculation... so its pretty much normal...

dear i have obtained wheat grass. what would be its method to administer . currently i am giving him Oderox 500 (Cipla Company) single tab daily along with Evion 200, Calcium P syp. indrop D one inj monthly.
i used to take it by mixing 1 spoon wheatgrass powder (spoon that comes with wheatgrass) in a few tablespoon of yougort...

GNC Super Foods Wheat Grass (Pittars burg). surprisingly it also contains iron. its very costly. i obtained one pack for Rs.4500- (45 dollars). should i continue 4 my son
as i told you on another post about 20% discount membership card ... get that card and it will cost you in Rs.3400.....

Regarding Iron .... GNC's one wheatgrass contains 6% DV (daily intake Value) of iron  that means less than 1mg....

Quote
few years back it use to cost 10 Indian rupee for 100ml considering inflation it could have gone up to 20 to 25 rupee
wheatgrass product we talked about above contains 60doses... 25x60=1500.... after PK.Rs to I.Rs conversion it cost 2337PK.Rs..

hi Andy, somebody told me that he is  giving his son a homeopathic medicine. his ferritin was 2400 b4 the medicine but after use of homeo medicine  it reduced to 700. its amazing.
Any Update ???


Title: Re: increase of Transfusional needs
Post by: zahra on January 15, 2016, 02:08:37 AM
Hafiz,
Can you share which homeopathic medicines you are using?
Zahra