Hardik

Hello everyone here.....

I want to know :-

1) what is inline filtered PRBC?

2)Benefits of using bedside filter with inline filtered PRBC..

3) difference between nat tested and inline filtered blood?

4) what is buffy coat in blood filteration?



Thanks

Plz reply....

Can someone more familiar than I with transfusion procedures answer this?

Hello everyone here.....

I want to know :-

1) what is inline filtered PRBC?

2)Benefits of using bedside filter with inline filtered PRBC..

3) difference between nat tested and inline filtered blood?

4) what is buffy coat in blood filteration?



Thanks

Before some years i got same kinda question when i read blood requisition form of Rajkot Voluntary blood bank. There were many kind of blood product from whole blood to leucodepleted RBC , buffy coat removed and what not?

But from above all question over time we knew that the best blood product for thals is Leucodepleted RBCs/PRBCs tested with NAT method.

ans to ur q 1. It is clinic side blood filteration If Ii am not wrong andy can correct me here
2. No benefits ( i confirmed it earlier with doctor ). Bed side filter helps only if the blood transfused within 48 hours of collection.
3.  Wrong comperision.
NAT is a method of blood testing it is far better than ELISA testing method of blood. NAT is having very low window period consequently more safe blood than ELISA.

4. I never bother to get answer this question as i know Leucodepletion blood product is best so why to think on other blood product.?

Hello Everyone here...

Hardik weighing 14.5 kg age around 4 yr is on IP6 of puritan's Pride from last 2 years ...but now I am left with only 2 month stock ...and I urgently need to order IP6 but unable to to find new link to IP6 of puritan's as site is updated so if anyone in group can help me out with current link ..I will be very thankful.

Andy plz guide me about the dose according to increasing weight and age. Cell Forte also provide IP6 and Inositol veggie capsules. Which one is better??

Thanks

Cell Forte is better than IP6, alone because it also contains inositol, which increases the effectiveness. Check http://www.amazon.in

Hello Everyone here...

Hardik weighing 14.5 kg age around 4 yr is on IP6 of puritan's Pride from last 2 years ...but now I am left with only 2 month stock ...and I urgently need to order IP6 but unable to to find new link to IP6 of puritan's as site is updated so if anyone in group can help me out with current link ..I will be very thankful.

Andy plz guide me about the dose according to increasing weight and age. Cell Forte also provide IP6 and Inositol veggie capsules. Which one is better??

Thanks

Puritan has done not good to indian users. They have launched dedicated indian websites and banned access to US site so that no one can access that and order. But this is not the problem.
Problem lies where they do not offer as much options as their US site. So many products are missing at all at indian site.

So currently if someone want to get supplements from them, they have to asked to their relatives, friends etc who visits US/UK/Australia to bring those supplements directly from there.

Another options is to wait and watch till they start selling the required product.

PS : I have 2-3 bottles left of Natural Vitamin E 400 IU with 50 mcg salenium expiring in Oct -18 which if anyone needed i can courier in India. It's cost is Rs 870+courier per bottle.

Puritan has done not good to indian users. They have launched dedicated indian websites and banned access to US site so that no one can access that and order. But this is not the problem.
Problem lies where they do not offer as much options as their US site. So many products are missing at all at indian site.

So currently if someone want to get supplements from them, they have to asked to their relatives, friends etc who visits US/UK/Australia to bring those supplements directly from there.

Another options is to wait and watch till they start selling the required product.

PS : I have 2-3 bottles left of Natural Vitamin E 400 IU with 50 mcg salenium expiring in Oct -18 which if anyone needed i can courier in India. It's cost is Rs 870+courier per bottle.

Very true, I struggle a lot too. Can't figure out why they had to do this.

Hello Andy

I had read your thoughts on L-Carnitine on Facebook. Will you please elaborate about this .

Hardik weighing 14.5 kg age 3 and half..is on calcium , IP6+wheatgrass(empty stomach) , folic acid and chelation med DESIROX.

1) Which other supplements should i prefer to improve his life quality ?
2) I read about L-methyl folate on this webpage but not available with chemist here..  so how to know if folic is absorbed in body or not and how to get L-methyl folate
3) Here docs don't advice any multivitamins...so if we prefer any multivitamin(without iron ) than what should be the dose.
4) plz provide any link about diet care of thalassmic child

Thanks

L-carnitine can be taken in low doses at age 3. L-carnitine adds nitric oxide, NO to the body. NO makes blood last longer and also helps protect against the long term problem of pulmonary hypertension that often affects thals as they get older.
See if you can find Metafolin as a folate supplement.
I don't typically advise multivitamins because they usually don't have enough of any vitamin in them.
See this link for supplement advise. A small child would take about 1/4 dose of most. http://www.thalassemiapatientsandfriends.com/index.php/topic,5190.msg48860.html#msg48860
Diet should be nutritious foods, with plenty of fresh fruits and vegetables. Avoid junk food as much as possible.

Hi,

Has your son undergone BMT or Dr. Ramanan's treatment?

Hello All

No pratik till now i had not plan for BMT due to its cost

Andy ....will u plz tell me that.... What is hydroxy urea ...and can any one take it or we have to prescribed it.

Hydroxyurea is a drug with many uses. In thalassemia, it is used to try and raise the fetal hemoglobin. It does this by suppressing the bone marrow, which can activate the fetal Hb gene. It works for many patients, but should be taken with folate and B12. I also suggest taking wheatgrass tablets or powder. All of there will help the drug's ultimate effects.

L-carnitine can be taken in low doses at age 3. L-carnitine adds nitric oxide, NO to the body. NO makes blood last longer and also helps protect against the long term problem of pulmonary hypertension that often affects thals as they get older.
See if you can find Metafolin as a folate supplement.
I don't typically advise multivitamins because they usually don't have enough of any vitamin in them.
See this link for supplement advise. A small child would take about 1/4 dose of most. http://www.thalassemiapatientsandfriends.com/index.php/topic,5190.msg48860.html#msg48860
Diet should be nutritious foods, with plenty of fresh fruits and vegetables. Avoid junk food as much as possible.

In my 30th September evaluation at the Bone Marrow Transplant and research center I heard exactly the same words the two doctors (Hematologist and Interventional Cardiologist) speaking about my health and some words getting uttered as Nitric Oxide levels and something. My file has a noting by the Hematologist to keep checking for pulmonary hypertension every 3 years.

But nothing was given to me to increase my NO levels.

What drugs and foods increase NO levels in our body?

I suggest about 10000-2000 mg L-carnitine or L-arginine daily to help fix NO in the body. Search online for lists for foods that boost nitric oxide levels. Here's an example, https://articles.mercola.com/sites/articles/archive/2017/07/17/heart-healthy-foods.aspx