Latest Update On AQEEL

Interesting, gum problems and vit c deficiency.
Happy belated birthday to your son Aqueel.
Although life may not be relaxing, i do hope you have some sort of routine now (also regarding transfusions) and you can also relax a little bit each day. Five years part of the family. I just thought today how blessed I am to have met people who experience the same.

Happy New Year all esp to Al & Aqeel!!

First, Im very sorry for late reply, actly last March my 1st son also diagnosed as having thal major, so just few months when i still tried my best to accept his younger brother's condition, My oldest son also have the very same disease. It really broke my heart. Im so lost that I do nothing except doing my daily routine. I even didn't visit this site for very loong time. & now im back. verry sorry to all.

Second- about the MADULINA... I stopped it loong time ago when my 1st son diagnosed as having thal major because his HB didn't raised after few months I've  gave it to him. I do posted it somewhere here about the MADULINA. 

Third- I want to wish HAPPY BIRTHDAY to Aqeel!!

 

been a while,

Not much of a difference really, Aqeel is on monthly transfusion, have not yet started with the iron chelators. He is now a 6 year old kid (time surely flies) who goes to a kindergarten and slowly learning Mandarin. Planning to send him to a Chinese Primary school next year. I've already registered him at the school and now waiting for their acceptance.

We are now considering of taking him to another hospital as we came to know (in fact we know this last year) that there is no specialist on Thalassemia etc at the hospital. We might end up sending him to a hospital which is 30 kilometers away and got to go through a hell of a traffic. Still contemplating tough

His youger sister is now 2 and a half yesr old, and seems that the do quarrel a lot ;) and Aqeel mostly had to give in.

I will update again soon.

Later u guys

 

Salam AL,

I'm in touch with your wife thru FB.

Which hospital do you plan to go?PPUM or HUKM?

My son currently received his treatment at PPUM and feel free to asked me if you need to know more about PPUM Thalas Clinic.

salam and thank you

Salam AL,

I'm in touch with your wife thru FB.

Which hospital do you plan to go?PPUM or HUKM?

My son currently received his treatment at PPUM and feel free to asked me if you need to know more about PPUM Thalas Clinic.

salam and thank you

Please add me in FB too

UPDATE!

Aqeel has finished his pre school and will be starting primary school next year. He now 24kg in weight and his height is 124cm (roughly)

His iron level 2 months back were 1700 and currently using exjade. We were advice to give him 4 tablet per day equivalent of 125mg deferasirox times 4 = 500mg

Yesterday during the routine monthly check up, we were told that his iron shoot up to 4+++ this is after using exjade daily without a miss for more than 2 months.

The doctor took again his blood to recheck the iron level and were told to come back to the hospital in 3 weeks (normally its 4 weeks)

My Questions is, is this normal? or perhaps the dosage were'nt right. We are now worried that maybe just maybe it is not suitable for him coz it is not effective. This has raise another question, do you guys know any cases where it is not effective to certain patient?

Looking forward to hearing from all the senior members here.

Thank You

For the record, the reason why i'm not active as before is that i am currently a fulltime student taking up Msc Management Psychology. Since then, i only open my computer for my assignments journals searching etc.

The suggested dose for Exjade is 30 mg/kg body weight. At 24 kg, Aqeel should be on at least 720 mg daily. 750 would be an acceptable dose. So, his dose is too low for his weight and should be increased. We have also found that if the dose is split into two and taken half in the morning and half later in the day, that it is more effective at reducing the iron load, as this gives a true 24 hour chelation period, that can't be had through once per day dosing. The world famous thal center at Oakland Children's Hospital is now also recommending this split dose method that was developed at thalpal. It works.

We have also found that if the dose is split into two and taken half in the morning and half later in the day, that it is more effective at reducing the iron load, as this gives a true 24 hour chelation period, that can't be had through once per day dosing. The world famous thal center at Oakland Children's Hospital is now also recommending this split dose method that was developed at thalpal. It works.

I very much second that. My speedy reduction in FE couldn't be possible without split dose! Am taking Asunra too and taking the proper increased dosage and splitting the dose definitely helps. It may also have happened in reports that the iron shown to be high was because of the free iron that has to be chelated was in blood steam, might be a good sign eventually, but we can't say. The dose is low which should definitely be increased to as to what Andy recommended.

-P.

Thank You Guys,

What do you think? Should i go to the hospital and ask them immediately or just wait for the next appointment that is in 3 weeks time?

Thanks Again

Update,

Aqeel's iron level dropped from 4+++ to 2+++. Dosage has been increased to 5 tablets per day, instead of 4.

Later

Update,

Aqeel's iron level dropped from 4+++ to 2+++. Dosage has been increased to 5 tablets per day, instead of 4.

Later

Congratulations!

Al,
in my opinion, one reaading of 4+++ may not be the true ferritin result if Aqeel's ferritin was hovering around 1700 ish before. if you get 2 or more consecutive reading of similar values then it is probably real. Many times fever, infection etc shot up ferritin values which will come down to previous level after the infection/fever has subsided.
We also do split dose for our 6 Year old. This works very well and has much much lower side effects like nausea, stomach pain etc. Good Luck !

Al,
in my opinion, one reaading of 4+++ may not be the true ferritin result if Aqeel's ferritin was hovering around 1700 ish before. if you get 2 or more consecutive reading of similar values then it is probably real. Many times fever, infection etc shot up ferritin values which will come down to previous level after the infection/fever has subsided.
We also do split dose for our 6 Year old. This works very well and has much much lower side effects like nausea, stomach pain etc. Good Luck !

Will do

They are now currently checking the level frequently. And YES i do split the dose as recommended. So Far So GOOD 

 

will update later

Hi Everyone 

I'm currently at the hospital taking care of Aqeel for BT.

21/06/2012 Ferritin 1767,  Hb/TWC/Plt = 7.9/9.2/169 weight=23.9kg, height=123cm

26/07/2012 Hb/TWC/Plt = 8.9/9.6/184 weight 24.2kg, height=124.4cm

21/08/2012 Started Exjade with 4tablets of 125 each

30/08/2012 Hb/TWC/Plt = 8.5/10.0/182, weight=24.7kg, height=124

04/10/2012 Hb/TWC/Plt = 7.9/6.2/151, weight=25.1kg, height=126cm

Started Spliting the dose

08/10/2012 Ferritin 2814,                                         weight 24.8kg

29/11/2012 Ferritin 3330,  Hb/TWC/Plt = 10.1/9.9/297, weight 25.7kg

Increased dosage to 5 tablets of 125 each

27/12/2012 Ferritin ? Hb/TWC/Plt =6.7/2.9/39,  weight 25.4kg,

Doctor said that aqeel might me admitted to the ward as his platelet is low.

Would appreciate it if supreme members, senior members, junior members and active members to advice me on the findings given above.

Thank You 

Hi, been a while since i last posted here

FYI Aqeel is doing fine. he is now 8 years old and in Standard 2 (primary 2). His on monthly transfusion and on exjade. His ferritin is at 3+++. Nothing much to update really just that he's doing okay and still on monthly transfusion. Alhamdulillah

Will upload a recent photo of him later