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

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Andy Battaglia:
Lloyd,

I made the spelling correction. Let me know if you see it misspelled anywhere else.

Lloyd Standish:
I suggest (subject to approval by the forum administrators) that this forum thread be used for carao study results and comments directly related to those results ONLY.  This will allow all results to be readily available in a single place, rather than spread out over many forum pages.  (If the administrators think an entirely new forum thread should be begun, this post will be moved.)

Carao study participants should copy the list below into a new post to THIS forum, one by each participant.  Participants can ADD new information over time, since any forum member can edit his own posts.

1. Confirmation of delivery of the carao
2. Date when carao is begun
3. Dose given
4. Age and diagnosis of patient
5. Average hb before carao was begun (the last several blood test results, if available)
6. Results of all hb tests done during or soon after the period of use of carao. Of course, the date of the test(s) must be included.
7. Whether or not any other treatments were started during the period that carao was given.
8. Any extra observations, such as observations on energy level and effects on the overall health of the patient.

Again, this forum is for carao trial results only and discussion directly related to those results.  For general discussion on carao for thalassemia, look here:
http://www.thalassemiapatientsandfriends.com/index.php?topic=1259.0

Here is the list of carao study participants, each of whom should make their results post (with all 8 points as listed above) to this forum thread:
[bgcolor=#FFFF00]UPDATED OCT 21, 2008  Carao study participants, please post your information to this forum as each of you agreed.  Below is a summary of information received as of Oct. 21[/bgcolor]

1. Manal (son) information provided
2. Manal (mother) mother's bottles not yet arrived?
3. Maha no information
4. Olivia Mary (Kathleen) no information
5. Karen James no information
6. Narendra no information
7. Mudit (non delivery to India, reshipment offered at my expense, no response received to my messages on Oct. 7)
8. Om no information
9. Al (still owes postage, carao shipped anyway but did not arrive to Malaysia, no response to my request for postage for reshipment on Oct. 14)
10. Zaini information provided
11. Sharmin (recently signed up, bottles not yet received)

For convenience of the participants, I am repeating below my use and dosage recommendations:


--- Quote ---2 teaspoons/day (1 tsp = 5ml) is a good dose for ages about 2-4 (see suggested dosage below).

The table below is a estimated dosage guide which can be modified to suit individual cases.  The suggestion that children under 6 months get the benefit of carao through their mother's milk is simply to avoid giving a such a young baby ANY other food except mother's milk.  However, I believe that Dr. Attahiru Sokoto in Nigeria gives carao to newborns for sickle cell disease.

For children under 4 yrs, carao should always be given with milk or formula, since the strong taste is likely to be a turnoff for the very young.  Children 4 and up who like the taste of carao can try it plain.

ages 0-6 months: nursing mother should take carao at 4 tsp/day
ages 6 months-1 year: 1 tsp
ages 2-4: 2 tsp
ages 3-5: 2-3 tsp
ages 6+ 4 tsp
--- End quote ---

Zaini:
Hi Lloyd,

Yes you are right,my daughter started carao on 19th August,started with the dose of 2 spoons a day,she had a transfusion on 30th August,her pre transfusion hb was 9.6,after this transfusion i doubled her dose to 4 spoons a day,then after three weeks her pre transfusion hb was 10.2.

She is 7 and a half years old,and though she was diagnosed as thal major in her hb electrophoresis report at age of three,but after a year of her diagnosis another doctor told me that she must be thal intermedia beacause she didn't need any transfusions till the age of three,neither she had any health poblems till then.

As i told you earlier that since last few months her hb was hovering between 9 to 9.6,i'll have to get the copies of blood work from the hospital for accurate dates and readings,which i definitely will.

Her pre transfusion hb on 29th august was 9.6,and on 19th september,it was 10.2.

She is already taking IP6 and Wheat grass super shots.

The difference which i felt was in her last pre transfusion week she generally becomes a bit pale,this was not the case this time,as her hb was a bit increased.

Zaini.

Manal:
Hi Lloyd,

1- i received all the bottles except two are still remaining.

2- Started the carao in June 2008

3- First two bottles i gave 5ml twice a day then starting third bottle the dose is 10ml twice a day

4- my son 6 years and thal intermedia , never transfused

5- Average HB is 6.2 to 6.5

6- On September Hb is 6.5 but there was a significant decrease in the reyticulete count, it became 3.5%, we never had it that low. On October 1 will be the second CBC

7- No treatment given except mineralsm and multivitamin, L-carnitine and folicacid

8-  No significant change except the reyticulte count that is mentioned above

I will update you with the new CBC after the first of October

manal

PS: As for me i didn't start cause i only got two bottles for me not four. What do you think, shall i start anyway or wait until all the bottles arrive??????

Sharmin:
I wish everyone the best in this trial. 

I hope Ahmad and Zainab's hg begins staying higher and higher very soon. 

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