Latest Update On AQEEL

Hi everyone,

Just wanna share an update on Aqeel.

During the last appointment 2 weeks back, Aqeel hb was 7.4. At first the doctor told us to stay and get ready for BT. But after discussing among them (3-4 doctors), they decided to put in on hold and to told us to come back in 2 weeks time. The reason was, Aqeel is as active as any kid can be.

Today is his appointment back at the hospital, sure hope that he does not need to be transfused.

For the record, aqeel is now 2 years 2 months old! but till now they (the doctor) have not done any test for him for example ferritin etc.

Please advise me on what to get tested, it seems that i got to ask the doctor the do the test rather than them doing it on their on.

Ahhhh Mannnnnn

How many transfusions has he had so far?

He had 3 BT!

1st = at the age of 12 months (october 2007) = 150ml
2nd = at the age of 19 months (may 2008) = 350ml
3rd = at the age of 22 months (september 2008) = 270ml

Dear Al,

I think that it is a good idea to follow the ferritin levels, but chelation usually does not begin until a patient has been transfused for 12 - 24 months - or until the ferritin reaches 1000.  If your son is going to be transfused regularly then chelation will be required in the future,  for now ferritin can be tested intermittently (every few months).  Because your son has low hg it is important to avoid food high in iron because he is likely to absorb iron.  He should avoid red meat and food enriched with iron.   

He will also need supplements such as L-carnitine, calcium/magnesium, vitamin D, zinc, folic acid, vitamin e, IP6 and others that are listed in the supplements thread. 

Sharmin

Thanks Sharmin!

I will get him checked for his ferritin level for sure! Difinitely!

Aqeel HB today is 7.1.

The doctor is not sure whether to transfuse or not! Please advise!

Dear Al,

If my son's hg were to be that low I would transfuse for sure - but you son presents more like a thal intermedia than a major so I am having a hard time answering your question. 

I personally don't think that a growing, transfused patient's hg should be allowed to go below 90 and these are my reasons : it puts stress on the bones, it puts stress on the spleen possibly causing it to enlarge, it increases blood volume and therefore puts pressure on the cardiopulmonary system, abnormal retics are produced and hemolysis of these abnormal retics depletes NO stores (NO is necessary to keep blood vessels healthy) etc etc.  For these reasons thalassemia major patients are usually transfused at hg between 90 - 100, but since your son presents more like a thalassemia intermedia than a thalassemia major perhaps the guidelines will be different for you than they would be for a thal major. 

Sharmin

Thanks Sharmin!

I just got back from the hospital, after discussing among them (the doctors), they decided to put it on hold yet another time. Aqeel has to revisit the doctor again in 2 weeks time.

Anyway, i'll keep you all updated on his situation/progress.

Later!

Al,

Ultimately, you will have to base the decision to begin regular transfusions somewhat on your own observations of Aqeel 's health. If he is developing normally, is not sickly, has a good energy level and if he is doing well on a day-to-day basis, will be the factors that can guide you. Of course, the doctor's advice will play a huge role in this and if they say he must transfuse, then you should do that, but as long as there is any question, Aqeel will rely on your observations. Please try to be objective about it and what you see over time. If he is maintaining the same level of energy and health, he may be able to continue the pattern of occasional transfusions. I do think that because he is manifesting as an intermedia and not major, that fetal hemoglobin inducers (hydrxoyurea) should be given a fair trial of at least one year, before making any decision on regular transfusions. Also, chelation is generally started after twenty transfusions. This isn't anything to be concerned about yet, but it would be beneficial if he was to be taking IP6 and green tea extract to inhibit the damage iron can do in the body. Establishing good dietary habits is also necessary.

Like all parents of thals, you will have to become the expert on your son's health. You have already shown a great deal of growth as a parent and I am confident that you will be able to make the right decisions based on your own objective observations as time passes.

AL

What is his growth rate? Is he maintaing the same rate?  This is the most important thing that you should always have an assesment for.

Please keep us updated and good luck

manal

One more thing to consider is bone deformation,please keep an eye on it,if you detect any expansion in facial bones,it would be time to start transfusion.

I don't remember if we ever discussed it,and i don't know what other people think about it,but my point of view is that facial features can play a vital role in a person's confidence level,i recently saw a thal intermedia girl,who was transfused once or twice,she had the bone deformation in facial area and stunted growth,she was 13 years old,but you won't believe if you ever saw her.She was very shy and was practically trying to hide behind her mother,i could only imagine what what she must be going through in her mind.

But again intermedias vary a lot,and as Andy said you'll have to become an expert on your son and be the judge,just try to think that way that what would Aqeel want from you,how would he feel in the future when he gets old,because bone deformation is not much reversible.

Keep us updated.

Zaini.

Thanks Andy, Manal & Zaini,

To Dr. Andy 
I will surely do my best, after all i can always refer to you all in here! 

To Manal
Aqeel weight is slightly reduced from last month. Previously his weight was 14.4kg but now its 14.4kg. As for his height, its 98 cm. (the doctor said that his height is O.K)

To Zaini
I will difinitely take your advice into account. By the way, i've change the picture of aqeel, that is how he looks like at the moment! What say you? heheh 

Thanks again everyone, Love u all 

Hi AL

The picture is so nice, may God bless him. I think his weight is also in te normal range for his age. Please  always update us and keep up the good work

manal

Hi everyone!

Aqeel is at the hospital at the moment, he's getting his BT for the 4th time. This is the first time ever they are putting in the blood straight not using any machines! And this is the first time ever also that Aqeel seems to be not at ease with the transfusion. He kept asking to open the needle form his hand saying that it hurts.

By the way, His HB was 6.2, weight was 14.5kg and his height was 99cm & he is 2 years and 2 months old!

I'm going back to the hospital in five minutes time, will update you guys later!

Later

Hi AL,

I know transfusions are hard in the beginning,but as you and Aqeel both get used to them ,they'll be more like a routine,if you decide to transfuse him regularly,and you'll see how well he'll grow and his appetite will increase,good luck with the transfusion.

Zaini.