advice on spleenectomy

I am ver happy for Part .

Best of luck.

Love

Dimple

Wishing you all the best

Enjoy your vacations.

Hey everyone

Sorry for the delay in posting. have been really busy as Prat is in S'pore for his winter vacations and I am totally tied up with him. he has so far got 4 shots of Recormon. His hb had gone to 7.5 then it has come down to 7.1 and now in S'pore 6.9.

Wanted to let you know my brush with a S'porean doc yday, :

I had taken him to the doc yday in S'pore they refused to prescribe him recormon and in S'pore no injection can be procured without prescription. She started with insulting inidan docs and how in Spore people come all over the world to get  treatment. She said  " people come even from US, to get treated". Anyways I could not take it anymore and I also gave her apiece of my mind and told her that if not  for  singaporean docs tht my son would have been well. He was born in s'pore and was not diagnosed for 2.5 years even when he was symptomatic. A doc from India had one look at him and knew he was a thal kid, so dont give me a lecture on wht S'pore docs are. Then she knew tht she has touched the wrong cord and said no no , this injection is against S'pore regime and stuff etc etc, so i cant give. We donot treat thal patients like this etc etc. Then I asked how do u propose treating him, by giving him transfusions.She said this is not the treament we  give to thal intermedia, she said he is ok on 6 hb and I shud not worry on his hb wihich is 6. I said wht abt his growth ? She said do u want to make him a sports person , why r u bothered abt growth n stuff. Thal intermedia live a normal life span. I am amazed at the calibre of Doc's in S'pore and how can they even say such things. She said u shd conitnue on Hydor oxy urea and he shud maintain his hb aroung 6 or 7. Then I asked that 3 years back i was told tht  hydro oxy urea was against ur  s'pore regime, now u r saying u can give. Wht are u trying to say here ?   Her point is tht she wud not give hydro oxy urea to any of her relatives or his son, cos one of the possibilty is tht it can cause cancer. So they dont give hydrea as it an cause cancer,  however I can still continue but she cannot prescribe recormon in any case. According to her  thal kids the rbc's r faulty or defective and recormon is just stimulating the boody to produce more defective rbc's .

After arguing a lot I knew it was a lost cause and came back home. Frustrated beyond belief.

It is those small defective cells that are keeping Prat alive. Yes, there are not as many as there should be and they are not as effective as they should be, but there are enough and of good enough quality to make Prat an intermedia rather than a major. What don't doctors understand about this? Increasing the amount of these red blood cells means higher Hb and more oxygen to the cells. I have heard some doctors make the same claim about folic acid, yet the vast majority of thal doctors prescribe folic acid as the very first thing in thal treatment.

Thanks Andy for your constant support!.

Today is a very special  day, it is my  daughter varrya's bday as she turns 4 today. Also Prathhit is in S'pore for his vacations and i am celebrating his bday also today(his actual bday is on jan 27). He will turn 8 on jan 27th.

Luv

puja

Happy Birthday Varrya!!!!!!! 



        

Hi Puja,

Say happy birthday to Varraya and Prat from Zainab and Hasan 

ZAINI.

Happy Belated Birthday Varraya and Prat

Hi to all

Thanks for the blessings and good wishes. Bday was very well, they both enjoyed.
however prat is down with throat infection now, and is looking again a bit pale. His doc in India is saying tht recormon not working and we shud still consider spleenectomy.doses


What should I do?

Pls advise.

Dimple - how long has priya been on Recormon , Prat has taken only 6 doses of recormon.
Thanks

Puja

Hi Puja

Sorry for delay.

Priya is taking Recormon from mid of aug 07. I thing she had total 20 shots of recormon.
but let me tell you that she had throat infection in dec. due to which her Hb count had gone down to 7.5. Now her another CBC is due on next week. ANd i will let you know how she is doing.

Take Care and Best wishes for Part.

Dimple

Hi dimple
happy new Year !. Prat has left to India on Jan 11, so I hv time now to update my posts again.

prat also had a throat infection recently here in S'pore and looks like his hb must hv gone down cos here. We will be getting a CBC done fpor him this week. He has total 8 shotys of recormon. my mum and I feel tht the injection is working but he has been just so sick this past year that he has not been able to stabilize. Dr marwaha has not seen him since a month and will let us know the clinicla diagnoses once he sees him. Lets see wht he says.

Rgds

Puja

Best of Luck Puja 

Love

Dimple

Dear All,

Kiindly allow me to join on board. I am a new on this site, which is truely great forum.I have greatly enriched by your knowledge and experience.IThank God that such thing exists!

I have gone through the entire coress.on the subject intiated by Puja-thanks to you for this -and to all others for chipping in with respective experiences.

I have been contemplating on spleenectomy as advised by my hema Dr. R.K.Marwaha for last 7 years and I have not been able to figure it out conclusively for lack of knowledge and fear that once lost it is permanent one.

Let me introduce my case.

I have two children who are Thal Intermedia as diagonised at PGI, Chandigarh, India. My 13 year old daughter, Milan, was normal till she turned of age 5  and  was diagonised as stated. She was started on Hydrea but Hb didnot go beyond 5.5 and  had to be put on regular blood transfusion(BT) since year 2000. Last year I requested doc to try hydrea again. But after trying in vain for 3 months she had to be put back on transfusions with again advice to go for spleenectomy as her BT interval is coming down to 15 days from 21 days, which was earlier. Last BT was done on  28th Jan 2008 and her Hb was 7.3.

As I had understood Thal. Intermedia can survive without BTs but mine has become major case. So, Please advice whether shall I adminster Resveratol/L-Carnitine/Recormon and what r the sources available in India or shall i go for spleenectomy

My son, Amiteshwar,who turns 8 this september, was diagonised as mild intermedia  and is on Hydrea from the beginning and Hb. has been hovering between 6 and 7.Will the above combinations help in his case, as well.

Looking forward to your response.

Best regards.

Amrit Sembhi

Hi Amrit

WELCOME to the forum.

I am really sorry to know that your both children are thal intermediate.
Regarding you daughter I don’t think that we can give her on Hydrea because she had more than 7 yrs being on BT. But we have one member Zaini her daughter is also thal intermediate and she is on regular BT may be She or Mr. Andy can guide you best.

Regarding your son i think so should wait for spleenectomy and try Recormon which is easily available in India by Germen company Roche or even by Renbaxy. And I am sure you can get L-canitine but I don’t know in which form.

About Revestrol you can check following link

http://www.thalassemiapatientsandfriends.com/index.php?topic=589.0

And you can also check the topic under heading "Working toward cure" for more information.

Take care

Dimple.

Hi Amrit,

Is your son's spleen enlarged?