Latest Update On AQEEL

Hi AL,

Do you check his post transfusion hb? and what did the doc say about enlarged spleen?

Zaini.

Hi zaini,

For the record for the previous BT and the recent one they did not do check post transfusion hb, infact the doctor just mentioned that the spleen in slightly overlarge but DID NOT SAY MORE!

I would say that the doctor here expect us the ask them instead of them telling us or advice us accordingly.

 

Keeping track of post transfusion hb will help you keep the record of intervals during his transfusion,and in how much time his hb goes lower,i know there is not a certain pattern for thal intermedia,but with recent transfusions Aqeel seems to be developing a pattern,so keep that in check.

Zaini.

Yup! He still coughing, infact, bygone if i came aback from plan to back him i apprehension he had slight fever, 37.5C, we gave him paracetamol, and aboriginal in the morning about 2a.m, his agitation was 38.9. Again we gave him paracetamol (tru anal), and his agitation resided afterwards 30 account to an hour wait.

andreajones021,

What do diet pills have to do with your rambling post? The link in your "message" has been deleted.

Hi everyone!

To be frank, i'm starting to be worried. 
 I'm working in Putrajaya/Malaysia and my son has been to Serdang Hospital for almost 3 years now.

Can i ask everyone in here something if you guys dont mind? Aqeel is now 3 years old (in few days time), (ooh by the way my wife is 17 weeks pregnant), when we went to see the doctor, the doctor told me that ny face look a bit,,,,(i dont remember the word). she said that it may be becouse of excess iron or iron overload. She advise us to do iron chelating the sooner the better.

My question is at what minimal age can we start on those iron chelators? The thing is aqeel has been to the same (general / government)hospital for almost 3 years now but they do not seem to take care of Aqeel thoroughly. What i mean is, everytime we went its gonna be a different doctor,,and every doctor just said that aqeel speel is slightly overlarged. So far i have no details on his iron level, bone density etc...Zero. No annual checks report etc. It seems that every time we went to the hospital, the doctor will check his hb level tahts it. if its low. do bt,,if not its ok then. I'm starting to get worried obout aqeel spleen etc.

can you guys advise me on what to ask and ask to be done, like need to know this figure? this figure? that figure? i will definitely ask the doctor about it and later ask u all on your opinion about it. Please if you dont mind, i hope that i'm not troubling you everyone in this group.

Just that now i dont know who to ask specificly about these things.

p.s.   anyone in here who are from kajang/purajaya/serdang/cheras? please let me knpw whether should i send Aqeel to other hospital perhaps HUKM, University Hospital etc? Perhaps they do have special programs for thalassemic/

THANK YOU.

Dear AL

Please read this link and feel free to discuss anything not clear

http://www.thalassemiapatientsandfriends.com/index.php?topic=1762.0

manal

Dear Al,

I'm so sorry i did not know of your posts if not for andy telling me to check it out..

I know your worries. Gov doc and hospital 'procedures' are like that in Malaysia. They tell you only if you ask and for us, we need more knowledge to get the best treatment available. And they change docs every 3 months, that makes things worse.

What i can advise you for now, you can go to PPUM, HUKM or Hospital Ampang. they provide that best thalassaemia treatment in the klang valley and surrounding area.

I dont know why there is an obsession for Malaysian doctors to make sure thals remove their spleen even if it is not necessary to do so. Personally i think thru my expirience, what they should take care for is the most basic thing of all and that is proper transfusion (keeping the HB more than 8) and keep the iron deposit low. If these two things were excellently taken care of, Insyaallah, all things will be fine.

Usually there is no minimum age to start chelation.Chelation will start if the ferritin reaches 1000 (roughly about 10 bags of transfused blood)

Hope my info brought any help.


nur[/pre]

Thanks Andy, Manal and Nur for your reply,

Thanks manal on the manual.

Thanks Andy for getting Nur to read my post and reply

Thanks Nur for the insight and suggestions. Hope that we can be of friends.

Thank you All

You are welcomed AL, keep us updated please

manal

Will do

Hi everyone,

Sorry for taking some time in updating everyone here on Aqeel, well I've been busy lately thats for sure.

Ok now, he is fine and the last BT done was 2 weeks back. That was when his hb got below 7.

About the suggestion by Nur, we did give it a thorough thought and are still contemplating either to change hospitals or not (as to go for PPUM, HUKM or Ampang Hospital) as those hospitals are quite far from our home (around 30-40 km)(it would take like an hour to reach with the heavy traffic). Just that myself and my wife are working and that to go there once in 3 weeks would be difficult. Furthermore, should somehow aqeel needed immediate / emergency treatment, the current hospital would be the best, as it takes around 10 minutes to reached there from our home.

Just to share with all of you here, recently i was introduced to the person in charge of the pediatric ward. Even the experts are under her wing. I've been told that the ward that aqeel's  attached to are not fully control / manage by them as they have handed over that ward to be taken care by the management of UPM University.   Thats the reason it seems, is not as organized and managed.

I have also came to know that the Ampang Hospital is the best there is at the moment but they only attend to those aged above 6 years old (if i'm not mistaken as my wife did gave them a ring the other day).

Most likely we've gonna change hospital to HUKM (its far by not that far compared to the others).
Still considering btw.

Nur: Do you know anything on saving the cord blood can be done in public hospitals? Which hospitals? How to go about? i know that serdang hospitals they done di just that

Later

 

Hi everyone,

Its been a while since i last posted here on aqeel update. I've been bz as always, work and personal activities). Well there's not much to update actually, just that he is as usual active as he could be. And that we have already sent him for pre school classes. (Today he is actually 3 years and 3 months old). He does look matured for his age.

I felt that he is a big intelligent young boy now intead of a small baby aqeel . Well, he is now eager to wake up every morning to go to school. I will for sure post the photos later .

Btw, aqeel will be soon be an elder brother of a Insya'Allah young and healthy baby girl . My wife is expecting soon (within the range of 13th march 2010). Please pray for us for a strong and healthy baby girl. Amin.

Okay back to aqeel, his last check up at the hospital, his hb was 7.5 and the doctor mentioned that perhaps he does not need to go for the checks every month, they're planning to set appointment either 1.5 to 2 months.

We're decided to opt for the cord blood bank, and that the only public hospital around that can cater for it is at HUKM. We're getting the representative from the company to explain to us further.

Btw, aqeel takes chlorophyll (if only you guys know the tastes  ) daily now, and its been more than a month now (last time he took it not daily, like 3-4 times aweek). From my observation, he has not been coughing nor having flue lately. I wonder its becoz of taking it. We gonna give another month and see any obvious diference on him.

Later u all
Salam

Hi AL,

Glad to hear Aqeel is doing fine,and congrats in advance for your baby girl  .

Zaini.

Congratlations AL for the baby

I remeber that you also were trying the  Bee pollens if i am not mistaken,do yo have any comments on using it??

manal