Latest Update On AQEEL

Thanks Everyone!

No worries! I'll keep you all updated. For SURE!

 

Hi everyone!

It's been a while since i logged in. Just that i'm busy with work etc.

Just to inform everyone that Aqeel's next appointment is on 22nd August. Frankly speaking, i am very eager to see his result becoz the last time he visited the hospital was way back in (June,,,,,as if, it is that long  ). Normally he has appointment on monthly basis.

Lets pray together that his HB maintains above 9.4 and NOT LOWER!

Will keep u guys updated!

Later

WISH YOU ALL THE BEST AL ...
and your SON AS WELL...

Wishing you all the best

Hi all!

I was really up beat when i got to know that my son HB was 9.4 a few weeks back! Infact, instead of our normal monthly check up, the doctor told us to come and see her again in 2 months time! Should i stick to once a month basis or as suggested by the doctor to have it once in 2 months?

His recent HB level made me wonder, is it possible that his hb increased further? Coz all the while i thought that his HB would be within the range of 7 - 8.

Maybe its the wheatgrass! Sure hope so! but am not sure for certain!

I'm trying to determine how and why his HB increased! Any Opinion on this!

My son is now 20 months old and his weight is 12.5 kg!

Thanks u all

Hi everyone!

I just came back from the hospital and found that Aqeel H.B is 7.2. The doctor advised us make a revisit in 3 weeks time. For the record, Aqeel's weight increased (now 13.3kg) and his height also increased above the normal average height curve. Just that his HB is now 7.2. The doctor said that his spleen is slightly swollen (if i'm not mistaken as i were told by the doctor). Any advise on this? 

Well, Remember the post of mine earlier? That i thought that Aqeel's H.B increased? Well it seems that his hb has never increased as i thought & hope so. I totally forgot that my son did have a transfusion in May, because of that his H.b in June was 9.4! Maybe because of the excitement of thinking his H.B increased, i totally forgot about his previous transfusion.    . What was i thinking?
 

Now, i totally believe that Aqeel H.B, will be in no matter what in the range of 7-8 only. I will still continue with wheatgrass and at the same time try whatever i can try for others (perhaps colostrum).

What a day!

Hi Al,
I had a feeling that because of Aqeel's tx in the month of May,his hb is sure to be on higher side in June .But I did not wanted to depress you considering my own situation.Have faith in GOD,hope a cure of this disorder comes very soon.Please ask your doctor regarding hydroxyurea treatment,resveratrol.Take care and lots of love and hugs to Baba Aqeel.

Hi everyone!

Just want to update on Aqeel! Went to the doctor last week because he had high fever (above 40). We were prepared to admitt him that day but the doctor said Aqeel's tonsillitis is swollen and maybe its because of that and also because of teething. One of the reason she concluded that is because, when given medecine his fever reduced straight away. His HB then was 6.2.

Now, the doctor told us to visit her again in 2-3 weeks time. By the way, Aqeel at the moment are not having any fever. Thank GOD! Alhamdulillah! Sure hope that, in his next visit, his HB would increased!

Is it common for intermedia (child esspecially) to have fever so often? I'm trying to study this to try to make sure Aqeel does not has fever so often. It seems that every time he had fever his HB would definitely be at a LOWER level!

Later

Wishing you all the best!

I guess it's the tonsils that are causing all the trouble and making the HB down. I hope he gets well soon

I have the same concern, does fever always cause hemolysis even if it is for just one day or a mild one as was the case with my son a week ago?

What is the frequency of hemolysis? Is it known or it is the nature of each one's body?

thanks

manal

All the best to your son - I hope he feels better soon and that his hg increases. 

Manal, my son's hg drops when he has a fever.  I wonder if the increased immune activity causes more hemolysis when a fever is present. 

Sharmin

Well fever is the release of energy when cells break up. So hemolysis could be a pretty good culprit for the phenomenon. Remember our posts regarding Thals feeling warmer in winter.

Hi,

I did read sometime back that HbE is unstable beyond 39 degree centigrade,so during fever episodes, the Hb level is likely to go down.

From general thought is it could be a good idea not to expose Aqeel to higher tempeartures or hot surroundings, and maybe monitor home temperatures. This is just a thought, but I am trying to do that for my daughter.

Does his fevers come form cold, like is he prone to catch cold easily and then have fever?

Best wishes

One of the common causes of hemolysis in transfused thals is antibody reactions to the blood. Infections can also be a cause, so in this case, the tonsils may be the problem. Treatment with antibiotics may be necessary if it recurs. Both the infection which causes fever and the hemolysis, as Sajid said, can cause fever. The breakdown of red cells does give off heat and fever is also common when fighting infection. The proper thing to do is to treat the source of infection in this case. If the tonsil infection subsides but the fevers continue, antibody reactions to the transfused blood should also be investigated. Folic acid, magnesium and vitamin E may also be of some help.

Not all infections cause hemolysis but some do but with thals I think hemolysis is more likely because the increased activity of the spleen during infection will most likely also filter out more red blood cells which will cause a drop in Hb. Improving the health of red blood cells through the use of supplements may reduce the amount of RBCs that are filtered by the spleen.

Hi everyone.....   should the blood always be filtered before a tx?  Hi AL....you son sounds alot like Olivia.....It is always something with her.....she to has had 3 tx and during the 3rd one she swelled and broke out in a bad rash...they stopped the tx and gave her meds she was ok in a few hrs. We are going back on the 10th....they will pre-treat her and "wash" the blood. I hope she does good...
Good luck to your son and family....you are all in my prayers
 Kathleen

Thank You Everybody!

Now i'm worried about Aqeel's spleen. What should i be expected of? Any experience to share?

He'll be 2 years old in 2 months time!

Later