Hi all!

I've request to see the one and only hematologst here in my state regarding to my sons condition ( both beta thalasemia major). actlyi duno what to say. but seems i've lots of things to ask bout my sons' treatment, the iron chelation and other stuff. at this moment,both of my son are treated by the common govermnt doctor sometimes the same person, sometimes other. when i askd about the things such as hydroxurea, deferixomine ( all that i've learn and found out fm this site, thanx a lot!) the doctor simply just say that the things i askd is for the expert. i can't access any information from them. i even can't manage the right and proper answer sometimes.

so,can i askd for all's favour on what should i ask the expert doctor on 10.2 next month regarding to my son's condition? what should i bring? help me to prepare ples...

Thnx!

Joyce,

The first thing I would ask for is a hemoglobin electrophoresis on the older boy. The previous results were confusing and need to be clarified. Of course, a blood count is also in order. Ask generally about what chelation is available for your youngest and what age he should be started on chelation. We need to get some idea about the quality of service available to you at your current treatment center. I would also like to ask Nur, once she's feeling better after her surgery, about what centers are available. Of course, if anyone else who knows Malaysia can give some input about where the best treatment is in your location, please do reply.

hi andy, thnx for the quick reply.

We didn't do further screen test on my older boy other than the previous test i've posted here. i just refer the previous result on my son's condition to date. but we regulary monitoring his blood count each month by checking his HBC. last month his HB is at 10.2.

it's alrdy 4 times i brought my younger to get the tx. normally we were given 6 weeks to each appointment. each time we went there, different doctor is in charge. last month my son only get his tx after 9weeks. no blood in the blood bank so we look for the donor ourselves. recently meeting, the doctor add the  doses of my younger folic acid to 2.5ml each time taken. he's only 8months is that okay for him? but i stick to your suggestion that is 1ml each day.

this is the nearest center availalbe from my place. all thallesemic around this town went here for treatment. quite new and big area centre. we get the treatment at the day care unit-very comfortable place but the only thing that no soo good is there is no expert and never enough blood for thallesemic patients. that why, everytime i asked for someting there is no one can answer my question. luckly i found this site-really helpful and equiped me with knowledge. thanks andy and all.

The folic acid dose of 2.5 is safe. Older thals should take 5 mg daily.

Joyce, all the folic acid your body doesnt need is remove out your body by itself (kidneys).

Thnx dori for the info..

actly im thinking of the supplements that im about to gve my son (IP6, vit E,resveratrol & wheatgrass).
im afraid too many supplements will effect and harm his kidney as i think it is too much for a boy his age.

what's the other member says bout this?

pleeeess anyone

Joyce,

Introduce only one supplement at a time and make sure he always gets plenty of fluids. At his age, I would suggest starting with vitamin E first in a low dose of no more than 100 IU. Wheatgrass should be seen as a food and not a supplement, so  that can be introduced at any stage. Wheatgrass also tastes quite strong, much like grass and isn't easy to get kids to take, so it may not be an option at this age unless you use an extract.

Dear Joyce,

You came to the right place for thal.. I understand your worries and concerns on the current medical treatment you are recieveing. I go to government hospitals for treatments too and it is quite frustrating when our questions are not answered thoroughly. May i know where did you go for treatment?

I am not familiar with Sabah because i am from kedah but i can make a few suggestions. You can go and see Dr Soo in Hospital Likas or Dr Lily at Hosp Queen Elizabeth. Both of these doctors are specialist and if you are going to Hosp Queen, Dr Lily is the president of Sabah Thal Society. So you can also look for this society and i am sure they will be a lot of help. The society is very active and have members that are very much happy to help you. I am sorry that i dont have their phone numbers but i think you can ask the Pediatrc department in hospital Queen about the society. Or just ask Dr Lily herself if you are seeing her 

Hopefully my info is helpful. I dont think that the doc will start your sons on chelation until his ferritin count is over 1000. The ideal plan for Thals in Malaysia is to keep HB above 8 and ferritin below 1000.  Supplements that they usually give is folic acid and vit B complex.

Love,
Nur

Thnx nur & andy!

- so when will i start to give the ip6 as my target is to lessen his ferritin level?
and, could anyone kndly guide me on whats this things? ples elaborate . i need to understand this clearly.

- exjade
- kelfer L1
-IV desperal
-ferrifrox
-deferiprone
-deferiprox
-defirexsirox

sorry to trouble you guys but it's really confusing me when im reading the post. s it different or is it the same?if it is,whic 1 is belong to the same mediction?

thanks!

.

- exjade
- kelfer L1
-IV desperal
-ferrifrox
-deferiprone
-deferiprox
-defirexsirox
thanks!

Deferiprone = kelfer, L1 and ferriprox
Deferasirox = Exjade, Asu(r)na
Desferal is just desferal

deferiprone is in pill and liquid
deferasirox in pill only
desferal is only fluid. Or through iv or stick a needle in the stomach upper legs is called subqutan?

I hope this helps a bit.

Thanks Dori.. it really helpful.

How's your son doing nowadays, Joyce?

Dori,

Im so very sad saying that both of them is on  monthly transfuions now. it really hurts me to see them in that condition. Few months back, i don't know what to do. Kind of lost. Thank God now im back on my feet. Here is where i get my strength from. i love you all for sharing and caring.

Hi Joyce, I am sorry to hear that is now the case. But I do hope they are full of energy and can do whatever they want to do with their mother's permission ;) <3 I am not always here, but the forums are!