Latest Update On AQEEL

Andy,

Do you think that starting continuous transfusions can solve the spleen issue,in Aqeel's case? And do you think maintaining hb as low as 7 is better then starting transfusions?

Zaini.

Reducing spleen size is one of the goals of regular transfusion, along with supplying sufficient oxygen to the body and resting the bone marrow so that the bones don't expand and weaken from excess activity.

The thinking about the treatment of thalassemia has changed greatly this decade and keeping patients as close to a normal hemoglobin level is now recognized as essential for normal growth and development and also for normal organ function that will not occur in an oxygen starved state. With advances in treatment and especially chelation, utilizing a higher threshold for Hb is now practical as long as chelation compliance is well maintained.

What concerns me about Aqeel right now is the frequent drops in Hb. At such a young age, there is so much development taking place that may be stunted by low hemoglobin levels. I feel that regular transfusions will be required unless other methods such as wheatgrass and hydroxyurea can prove successful in raising the HB. I have to agree that striving for normal Hb and normal growth is best in the long run, as the patient will be healthier with normal bone and organ development. I think antioxidants also must play an important role in protecting the organs from damage caused by accumulating iron deposits.

Kathleen, thals should receive only red blood cells and it should be filtered to help protect against transfusion reactions.

http://www.redcross.org/services/biomed/blood/supply/ulr/factsheet.html

What are leukocytes?
Leukocytes are white blood cells, one of the types of cells in human blood. The body produces leukocytes to help fight off foreign substances in the body such as bacteria, viruses and abnormal cells in an effort to avoid sickness or disease. However, when leukocytes are transfused into another person, with red blood cells, platelets or plasma, they are not well tolerated and have been associated with some types of transfusion reactions.

What is leukocyte reduction?
Leukoreduction is the removal of contaminating white blood cells from blood products. The most common method of leukocyte reduction is filtration. In this process, blood is passed through a filter that separates leukocytes from other blood components, based on their size and stickiness.

There are three types of filtration that may occur:

    * Prestorage leukocyte reduction:
          o In this preferred process, filtration occurs at the blood center soon after the blood is collected and is performed using standardized, quality controlled processing methods designed to produce a consistent level of leukocyte reduction.
    * In-lab post-storage leukocyte reduction:
          o Filtration occurs after the blood has been delivered to the hospital.
    * Bedside leukocyte reduction:
          o Filtration occurs at the patient's bedside as the transfusion is being given.

What are the benefits of leukocyte reduction?
Leukocytes contained in whole blood can act as a contaminant when transfused into a recipient, causing reactions that range from mild to potentially harmful. Leukocytes in transfused blood have also been associated with more serious problems, such as transmission of certain viruses, including cytomegalovirus (CMV), a common virus affecting more than half of all North Americans, and human T-cell lymphotropic virus (HTLV-I/II) which may cause blood or neurological diseases. Leukocytes have been known to cause the formation of antibodies that make future transfusions less likely to be effective and more likely to cause an adverse reaction.

By removing leukocytes from whole blood, the incidence rates for febrile (fever) transfusion reactions are significantly reduced for patients susceptible to this reaction, and may result in improved patient outcomes, shorter hospital stays and reduced health care costs.

Hi AL,

I think you should consider what Andy said,when there isn't enough blood in the body and enough oxygen,it will definitely effect body system in so many ways,every organ will have to work hard,you may not see any difference in his growth right now,but keeping low hb may create problems in the long run.I know before starting transfusions,it seems like a scary idea,but once you see the changes in your kid,you'll agree that it's better for him.

Wishing Aqeel all the best,

Zaini.

Hi everyone!

Just to update about Aqeel's condition! Well, last Friday we went for the needed check-up and Aqeels HB was 7.1.

I thought as first that we wont be needing BT but the doctor told us to get some "top up"  . So for the record, Aqeel went for his BT last Friday.

You are right Zaini, after seeing Aqeel changes after the BT, i agree with you that it is the best for him. I am still continuing with the wheatgrass as i have not receive the Caroa juice. Maybe after a year of using wheatgrass and it does not show any significant difference only then i'll stop giving it to Aqeel.

Alivia Mary,
I wish you all the best with your daughter etc. You are all in my prayers too. 

Sure hope that Thalgen will be made available soon!

Later

Hi everyone,

Just to let u all know that Aqeel next check up is in 5 days time. He had running nose and coughing for a while now! We did gave him cough syrup and antibiotics but until know he stills cough. (coughing usually and often during night time).

I did a post right before writing this, sure hope everyone could check also the topic i wrote on [color=#ff1300]Yisui Shengxue Granules[/color] under Working Towards Cure if 'm not mistaken! Just that i thought some us might miss on it.

Later

I wrote...................It seems that this topic of Yisui Shengxue Granules has been brought up before but until now no one knows actually what is it? how to get it? Esspecially here in malaysia!

Hi AL,

For cough,try a spoon full of honey and a pinch or two of turmeric powder in mild warm water,make him drink it half an hour before sleep or just after he wakes up in the morning.It works wonders for my son.

Zaini.

hi AL ,
here is a link please check it has several herbal recipes to handle cold and flu ...once my doctor adviced me Cnnamon Tea ( Qahwa ) For Cold and flu ... this link has some recipes of it ..

http://www.livingawareness.com/coldandfluRecipes.aspx

i think this one is good one ... coze its similar to my mom's recipe ... she made this tea without Suger or any other sweetener ....

Cook Time: 3 minutes

Ingredients:

1 cinnamon stick
1 cup of boiling water
1 regular or decaffeinated black teabag
erythritol, stevia, or another sweetener, to taste (optional)
Preparation:

1. Place the cinnamon stick in a cup.

2. Add the boiling water and steep covered for 10 minutes.

3. Add the teabag. Steep for one to three minutes.

4. Sweeten to taste, if desired.

Best Regards
Take Care
Umair

hi everyone...
Just wanted to say Olivia is doing good since her last tx she gained a pound and grew 1/4 in4 weeks.
She just had another tx on Wed. she did good but she was complaining of back pain. Is this normal after a tx? She looks so healthy I am so happy, on the other hand, I know its because of the tx 

I hope everyone is doing well. My love to all
kathleen

Hi Kathleen,

I am happy to hear that Olivia is doing fine,i am sorry i am not so sure what can be the cause of her back ache,and yes transfusions can do wonders with child's over all health,but keep track of her ferritin levels if she is transfusing regularly now.

Good luck.

Zaini.

Kathleen,

I am glad to hear that Olivia is doing well after her transfusions.  As Zaini said, you will need to keep an eye on her iron levels if she is transfusing regularily.  My son also complains of back pain once in a while.  Maybe it is from being in an uncomfortable position, or sitting/lying down for too long during transfusion. 

All the best,

Sharmin

Thank you guys......
Olivia's ferritin was 510 last month I will find out Monday what heer current ferritin level is. I was also thinking that her back could be hurting due to growing she is getting very tall. She looks so beautiful her lips are so red I will let you know on monday about her ferritin.

Kathleen



'

Hi everyone!

Here is the update on Aqeel al Haady!

Today he went to the hospital for his routine check-up! We were worried as he has catched flu a few days ago and that he had cough for the past few months! (coughing occasionally in a day, often at night). Thank God everything is fine. He is not having asthma etc!

He is now 2 years old weighing is 14.1 kg and his height is 98cm. Sure hope that this is within the normal average weight and height!

TODAY! We did found out that Aqeel hb is as the same as previous month that is 8.7 

Now, i'm sticking to what we are giving him! I'm not sure which is influencing his HB level!

To share with the rest of the members here! On top of his daily folic asid and multivitamin, we are giving Aqeel also
1. wheatgrass - 1 full glass a day (1 sachet for 1 glass)
2. juice that comprises honey+dates+habasstus sauda (1 tablespoon in the morning and 1 at night) = product named Al Qurma (if you search it it will appear only in Malay wordings)
3. Colostrum = product name Alphd Lipid (Occasionally at night, we mix a little of it in formula)

I dont want to gamble on anything so, i will stick to all those above!

Sure hope that this info will help others too!

Later!

 

Hi Al,

It's great to hear Aqeel is doing fine,keep updating.

Zaini.

Al, though dates is an excellent source of minerals especially potasium, Selinium and calcium but it has iron too.

This link will help you know what food consist of
http://www.nal.usda.gov/fnic/foodcomp/search/

manal

Thanks Manal!

But it seems that we cannot escape food with iron.