Latest Update On AQEEL

Of coourse its possible to buy Exjade or Asunra,and yes it is a bit costly,I don't know about your currency,but in Pakistani Rupees,a box of 30 tabs of 100 mg Asunra costs 1440 rupees.

Zaini.

Hi AL n Zaini ,
1440 PK.R = 55.38 M.R  (Malasyian Ringgit)
55.38 M.R = 17.26 USD ( U.S Dollar )

so Asunra's price wud b approximately around 55.38 M.R  or 17.26 USD in Malasyia  if Asunra is available there in Malasyia ..

Best Regards
Take Care
Umair
 

Hi all,  

latest on Aqeel (3 years and 8 months old), recently i forgot to give his folic asid and multivitamin for 2 days (unintentionally) but strange enough i see him a bit chubby for the pass few days. As soon as i remembered (that was yesterday), i straight away gave him his folic asid and multivitamin.

For the record, his weight is 19.6kg and his folic asid dosage was 2.5 ml.

Now i'm wondering whether is it becoz of the medicine or something else that made his gain his weight? Today is Tuesday, his next visit to the hospital is in 2 days time (Thursday). Pray for his good health and his H.b as high as he could have. Last month was 7.7

Later  

Hi AL,

I don't think folic acid has something to do with his weight,but folic acid is a B vitamin and B vitamin can sometimes give you stomach ache or loose stools if taken on an empty stomach,was Aqeel having any of those problems when he was taking Folic acid?as this can make a child loose weight.If he is in normal weight range,you shouldn't be worried.

Good luck for the next checkup .

Zaini.

Hi AL,

I don't think folic acid has something to do with his weight,but folic acid is a B vitamin and B vitamin can sometimes give you stomach ache or loose stools if taken on an empty stomach,was Aqeel having any of those problems when he was taking Folic acid?as this can make a child loose weight.If he is in normal weight range,you shouldn't be worried.

Good luck for the next checkup .

Zaini.

Aqeel has not been having problems like what you've mentioned. So far his height and weight are within the normal range.

Come to think of it, i'm not worried that he's a bit chubby. I like it actually, feels like he's eating well and doing good. 

Nothing much to udpate really,

Aqeel just got out from the hospital and did a BT (320ml), instead of proposed 400ml. He's doing fine, active as ever.

LATER

Happy for you AL, keep it up

manal

I am glad to hear it went well. What was his pre transf. hgb?

I am glad to hear it went well. What was his pre transf. hgb?

His pre transf. hb was 6.6

His pre transf. hb was 6.6

In gl/dl or mmol/l ?

Hi everyone, 

In gl/dl or mmol/l ?

, I'm afraid i dont know its in gl/dl or mmol/l? 

Sorry, been busy lately, Ok now, aqeel (3 years 11  months) spleen is 7cm, liver 3cm, iron level 6++, last HB 6.7, height 114cm and weight 19.5kg. Due to this he has his 4th BT this year recently that was 2 days back.

Need some advise though, when we went for the monthly check the other day, the doctor who is attending to Aqeel ask for another expert to join in as well. It seems that they are not sure either to maintain their previous call that is to tranfuse when his HB is lower than seven. According to them, they see that Aqeel weight and height is slightly going to stagnent level, they say that it would/would not be stagnent, as they cannot foresee it. ANd that Aqeel face does shows something (dont really know the actual word). After discussion with them, we've decided as suggested by them to get BT not below 7,,but now below 9. Meaning that Aqeel might have to go for BT once a month from now on. Should i stick to below 7,,or chage gradually perhaps below 8 and then below 9? I actually told the doctor that why not we change to below 8 and see but they say it wouldnt help much. They prefer to treat Aqeel as major. Here's his statistics:-

                HB/Weight(kg)/Height(cm)   BT Date
Jan               7.5/18.3/109                      25/2
Feb               6.8/18.7/109                      9/4
Mar                                                    17/6
Apr               6.7/18.9/110                      3/9 350 ml
May               7.7/19.0/112      
Jun               6.7/19.0/113      
Jul               8.4/19.5/113      
Aug/sept       6.7/19.5/114      

Pray that Aleesya (his sister) is not thalassemic. Ameen. Gonna check next month when she is 7 months old.

Later, 

Hi

My daughter was having the same case as yours and she started on regular monthly BT when she was 5. Maintaining a Hb level above 10 is beneficial to the child.

Cheers.

Hi AL,

I agree with Omega,keeping hb below 7 isn't good for a child's growth.

Zaini.

Al,

The doctors are correct in saying trying for an Hb of 8 would be useless. Either you stay with the current regimen of transfusing only when below 7, or you commit to regular transfusions and keep the Hb above 9. The in between method was used for years on patients and the results were not good, as patients did not get the real benefit of transfusion and suffered in terms of growth and skeletal deformities. If the child is not developing properly physically at an Hb of 7, transfusions should commence, and the Hb kept above 9 so that physical development can proceed normally. Since the doctors can detect changes in his facial structure (and this is one of the most important measurements in thal intermedia), I would advise to begin regular transfusions. He is at a stage where his bones will expand, causing weakness and malformation, unless more blood is available. Even though he will now need chelation, I am certain you will be much happier with his growth and development once he gets blood regularly.

Thanks u guys, i sure hope for the very best. He's a strong boy. Gods willing. Will update periodically