advice on spleenectomy

Dear manal

Actually I also thought so , tht Hydrea can be taken endlessly. However with Prat's viral infection , the wbc fell down and we still continued him on hydrea as we were not aware of the WBC  level. When we checked witht the hema, he told us to stop Hydrea. I feel he was worried tht Hydrea is brinigng down his Wbc as it is a side effect of  hydrea. However my opinion is tht it was the viral which brought it down. For 3 weeks his Hydre was stopped and has been restarted. now we are awaiting the CBC on nov 15 to kow further. We hv been not advised to do  liver function or kidney function test so far. i am thinking of getting it done. Could you let me know what am I ssuppose to look out in these tests. I think Hydrea can be taken long term as told to me by my Hema.

Dear dimple - Regarding recomoron, pls advise how is it taken. Is it given as per the weight of the kids. Did u get in touch with anybody else who is giving it so far.

Dear Andy -  Do u know any more members' whom I can talk to regarding Recomoron.

Thanks

Puja

Dear Puja

My hema. requested the kidney and liver function + CBC every month until she makes sure that the body is tolerating the hydra, then she told me that the liver and kidney functions will be done every 3 months and then every 6 months as long as he is on hydrea.

 General Kidney functions include: Blood urea, serum creatinine
 General liver functions include: Bilirubin (total/direct), SGOT(AST), SGPT(ALT)
There is also alkaline Phosphatase, but i am not sure which function it belongs

According to the hema, if your WBCs dropped constantly under 3,500 hydrea should be stopped

Manal

Hi Puja

Pls. check the following link.
http://www.thalassemiapatientsandfriends.com/index.php?topic=1255.15

I really dont know if anybody else in this forum is taking Recormon.
It is given according to the body requirment. I dont know whether is has do anything with weight.
but pls. give a call to Dr. V.P.Choudhry. I think he will be quite helpfull. When i was in India I talked to Dr. Methew(pediatric Hemo.) from CMC Vellor and she told me that Dr.V.P.Choudhry is one of the senoir most Hemotologist in India.So, Pls. Give him one call.

Pls. Let me know further devlopment of  Part.

Take care

Dimple.

Hye Dimple

I just spoke to Dr Chowdhry, I must say he is a very nice person and gave me a lot of time. he says we should run some tests. Do u remebr wht tests did he run on Priya.

Can u give me a break up of all the tests, he mentioned something on the liver function and EPU. I dint understand wht is EPU and then he said somehting abt renal function. Can u tell me more about it.

looking forward to your reply.

Puja

Hi Puja

I am gald that you talked to Dr. Choudhry.
For Priya, Dr. Choudhry asked us to do LFT (liver functioning test),CBC and Serrum Feritine test. we didn´t do any kindney test. And regarding EPU I dont know what it is.

Hey Manal, Do you have any idea what is this EPU test or anybody else know about this.
Pls. let us Know.

Take Care

Dimple.

I am sorry i have no idea

Manal

Puja,

I don't know anyone who has taken any of the EPO drugs other than my employee who was given Procrit after chemo. He said his blood count did rise but he doesn't know if it was the Procrit or just the normal restoration of his blood after chemo. He did experience an unpleasant sensation that he described as feeling like he was swimming in blood.

EPO drugs do work with hydroxy in some patients to increase blood production. From http://www.annalsnyas.org/cgi/content/abstract/850/1/129

The results show an additive effect of the two drugs, in some of the patients.

If other methods do not increase his Hb, it should be considered before splenectomy.

I just want to add that Dr Choudhry is well known in India and has worked with thals for decades. I met him at the Dubai conference and he is a truly dedicated doctor who understands the many complexities of thal care and that we are far from where we need to be in terms of providing the necessary help to thals around the world.

I do not know what EPU refers to as it is an abbreviation for many things.

Hey All

Sorry no posts' lately cos was busy with diwali.

Manal - I had gone to buy L catnitine but  the pharmacy lady here said tht L carnitine here is used for loosing weight n stuff. Also Body builders use it. I dnt know wehter it is true. However the bottle which they had said tht for loosing weight. Could you give me a reliable source where i can buy it from. I am in S'pore, so if u could advise me a brand which is readily available.

Prat is going for his CBC test tomm, along with Liver functin test n Kidney. Hopefully if everythign is ok, then we can start Recormon for him.

Will update you on the results as soon as I hv them.

Tk care

Puja

HAPPY DIWALEE PUJA AND DIMPLE    

ZAINI.

Thanks Zaini 

HAPPY DIWALI PUJA

Best of luck,Puja.I will pray for Part,Hope every things come OK in his test.

Dimple

Thanks Zaini for your gretings!

Thanks Dimple, will keep you posted on the results.

Luv

Puja

Hi Puja

Happy Diwali and sorry  for the delayed reply

I don't know if it L-carnitine helps in losing weight or not, but it is true that it is used in body building as it helps in improving the athletic performance. Actually i don't know who sell it in Singapore as i use one that is made locally by MEPACO http://www.mepaco-pharma.net/html/Get-trades.asp
The syrup i use has a dropper and i give Ahmad one full dropper twice a day 5 days/week. The full dropper is 1ml and it contains 300mg L-Carnitine and the following is written in the phamphelet of the L- Carnitine

Indications:
1-Primary L-Carnitine deficiency myopathic systemic progressive cardiomyopathy
2-Secondary Carnitine deficiency due to genetically determined disorders: acidurea and disorders of beta oxidation
*Secondary Carnitine deficiency due to aquired conditions: heamodialysis and renal fancony syndrome
3-Myocardial infarction L-carnitine decreases the infract size, L-carnitine has a cardio protective effect
4-Low birth weight infants
5-Haemolytic anaemia (Thalassemia & Sickle cell anemia )
6-Improve atheletic performance
7- During treatment with anticonvulsant drugs ''sodium valpoate''
8- During treatment with Pivampicillin
9- During antineoplastic therapy ( Anthracycline )
10- Full term infants receiving soya based infant formula
11- Long standing leg ulcers
12-Idiopathic asthenozoospermia

So as you see there are many things L-carnitine is used for

Let me know if you have any question

Manal

Thanks Manal  for taking ot so much of ur time and typing everythign for me in details, I really appreciate it. 

I am going to ask Pratr's Hema to let me know wether it is available in India. Will Keep you posted.

His results are due today,  will know future course of action from the results i guess.
Tk care

Puja

Andy said
(I do not know what EPU refers to as it is an abbreviation for many things)
      I said: we have in the aviation ABU (AUXULARY POWER UNITE)  we use it in the airplane
                                     khalifa 
                             state of kuwait
                      one for all and all for one