The Carao Trial - How effective is it & who benefits most etc.

Thank you kindly Narendra,

Big hugs to your little niece 

Sharmin

Hello Mariam,

To be honest, I don't know about postal delivery to Kuwait.  Over the last 6 years, we have never shipped there, I think.  If you are reasonably sure that you can receive airmail from other countries without loss, then you could go ahead and order it.  However, I request you order not more than 2 bottles.  They would go in a single package.  If those bottles arrive OK, then you could order more if you wish.  We guarantee delivery. That is, we reship or refund if the package does not arrive.

I recommend 4 teaspoons/day for a 21 year old.  I hope you get great results, and will post those results to this forum.

Regards,
Lloyd

Maryoom, i have received the bottles in Egypt soi guess you can too. Good Luck

manal

You are welcome Mariam. I received them directly at my home address

manal

Andy,

Can some of the symptoms that Zaini, Maako and I describe during the last week before tx be related to hypoxia and an increased volume of blood flow during the last week due to the bodies response to low hg (the body produces large volumes of blood in response to the low hg level) causing pulmonary hypertension?  This really makes me want to keep my son's hg above 95 at all times!

Sharmin

Sharmin,

The reported symptoms are fairly vague so it would be hard to say definitely, but the hypoxia and increased hemolysis can both lead to PHT. This is a main reason that acceptable pre-transfusion hemoglobin levels have been reconsidered in recent years. Preventing the problems associated with low hemoglobin levels is becoming more of a focus in thalassemia, especially as the effects of higher Hb are observed in chelation compliant patients. This will cut down on low oxygen problems and should also decrease hemolysis, by reducing bone marrow activity which of course means fewer bad red cells to be destroyed. Whether any of this or something else is responsible for the described sensations is probably a guess. These are the types of symptoms that would not be noted by most doctors so there may be little if any awareness that patients experience these symptoms.

Andy,

Can some of the symptoms that Zaini, Maako and I describe during the last week before tx be related to hypoxia and an increased volume of blood flow during the last week due to the bodies response to low hg (the body produces large volumes of blood in response to the low hg level) causing pulmonary hypertension?  This really makes me want to keep my son's hg above 95 at all times!

Sharmin

Sharmin,

My daughter's hb at that time was above 9.5,it came 9.9,that's why i was surprised.

Zaini.

Although it is near impossible to predict what causes these similar symptoms the week before tx (as the hg nears 100) - especially if we are not sure of the actual prevalence of this isssue, I wonder if the blood cells' oxygen carrying capacity decreases after a certain amount of time - as they come close to their 'expiry date'.  People are always making new blood cells in place of the old ones - red blood cells have a life of 28 days after which the body replaces them.  Non thal people usually make more red blood cells when their red blood cells become less effecient.

I wonder therefore if by the fourth week,
the blood's oxygen carrying capacity is reduced - causing some hypoxia - resulting in breathlessness
the body recognizes the hypoxia and the dropping hg - and in response the marrow feels the need to become active - increasing the volume of blood somewhat - causing pulmonary hypertension. 

In reality, it is very hard to imagine what goes on - or whether anything happens or not.  It is a little distressing when the kids don't feel right and even more when they seem breathless.  I am wondering if the best solution to all of this would be to have smaller bi weekly transfusions -  so that the red blood cells are fresher (than they would be after four weeks) and there would be less drastic change in hg all of the time.   

What do you guys think?

Sharmin

But Sharmin, does transfusing half the amount of blood will increase the hb the same as transfusing all the amount needed one time??? I think it wouldn't and if this right so we are again faced with a low Hb state?? Waht is right???

manal

Hi Manal,

I see how it can seem that way - but think of it as re- filling a glass while it is still half full rather than waiting for it to be empty.  You are still putting in the same volume but in smaller intervals.

For transfusions it would work this way - lets say that after a transfusion my son's hg is 140 - after two weeks it is 120 and after 4 weeks it is 100.  If we transfuse him again after two weeks it would only take half the volume of hg to get him up to 140 again compared to what it would have taken were he to drop to 100 before being transfused.  So basically we tx him to 140, let him drop to 120 and then transfuse him to 140 again.  Basically he will always have a higher hg. 

Does that make more sense?

Sharmin

Hi Sharni

If bi monthly was such a beneficial thing, then why would world wide doctors prescribe it monthly or when the body needs, there has to be a catch to it or else all the kids would have gone thru bi monthly. maybe it was not prescribed due to the extra pricks and then more hospital visits. It is a good point to think though, I have only come actoss people who have got bi monthly in emergency sitautions or when they were sick and body was not coping up.

Also one time I came across a mother who said that the blood transfusion has to be done very slowly over a period of 6 hours or more, cos according to her the faster you give (in govt hospitals they are short of resourcres as in beds) the faster the hb comes down. Meaning if the transfusion has been given over a peiod of 4 to 6 hrs the next required blood transfusion  requirement will be over a month and if it is faster then her daughter needed transfusion with in 21 days. Have you also experienced this???.

Manal - A sure shot way of finding out haemolysis is to monitor the childs urine colour. Sometimes the urine colour is transparent and healthy and over the same month in many days I have seen that urine colour has changed to brown, dark brown, orangish. It is all haemolysis. Also when the child is down with a viral infection then there is  definetely more hameolysis happening in the body.

There is another thing which I have noticed with my son is .. that there are days when the white part of his eyes are clear not absolutely like healthy kids but abt 80 % and then there is a yellowish layer which forms slowly and goes off ..it is a monthly process. I see it quite often. Doctors say it is ok. Guess something to be with bilirubin. Has any one noticed this too??

Take care

Puja