situation changes for me...

  • 52 Replies
  • 43889 Views
*

Offline Manal

  • *****
  • 3100
  • Gender: Female
  • mother of thal intermedia child
Re: hb stable- IS THERE ANY PROBLEM FOR STEM CELL THEREPAY?
« Reply #15 on: March 04, 2008, 12:31:28 PM »
i am so sorry Micky, hope his Hb will recover soon ,please keep monitering him

Wish you a speedy recovery

manal

*

Offline priya

  • ***
  • 121
Re: hb stable- IS THERE ANY PROBLEM FOR STEM CELL THEREPAY?
« Reply #16 on: March 04, 2008, 10:42:16 PM »
Hi Micky,

I am very sorry to know that your son HB has been dropped so much. I know its very depressing for the parents when they see there liittle one doing well and all of sudden they catch some infection and there nos. go down. But pls. don't lose heart and have faith in GOD.
I hope and wish him speedy recovery.

with best wishes

Dimple

*

Offline maha

  • ****
  • 424
  • Gender: Female
Re: hb stable- IS THERE ANY PROBLEM FOR STEM CELL THEREPAY?
« Reply #17 on: March 05, 2008, 04:50:21 AM »
Hi Micky
Viral infections can really take their toll on children. This is the first time his hb has dropped this low and can understand how depressing it can be. Are you still giving him carao? Although it has not improved Hassan`s hb I have found that it gives him instant energy. Also give him a baby massage with olive oil or sweet almond oil(Roghan badam shirin), it will give his weak legs a little strength. Inshallah his hb will recover soon like before. Wishing him a speedy recovery
MAHA

*

Offline Zaini

  • *****
  • 3448
  • Gender: Female
  • Life is too short to be perfect.
Re: hb stable- IS THERE ANY PROBLEM FOR STEM CELL THEREPAY?
« Reply #18 on: March 05, 2008, 12:47:27 PM »
Hi,

I wish your son a speedy recovery,viral infections or fever do take their toll on kids,Zainab is also suffering from fever,i wish it will go off soon, or her hb will be lower then usual at the transfusion :(.

ZAINI.
^*^Xaini^*^

Re: hb stable- IS THERE ANY PROBLEM FOR STEM CELL THEREPAY?
« Reply #19 on: March 05, 2008, 05:20:43 PM »
Micky,

Please don't get upset, I am sure your son will recover soon, our prayers are with you. I read you never wanted a blood transfusion for your child and you were trying alternate ways to avoid the BT. Please be assured blood transfusion is a life line for thal major children and there is absolutely nothing wrong with it. Everytime we take my daughter to BT and we see her happy and energized, it makes us believe that thal major is manageable. If the hb of your son won't improve than please don't hesitate to have a BT, it is perfectly fine. You tried your best and besides you still have a chance to continue trying alternate therapies alongwith regular BT.

Please keep us posted on your son condition and remember we are here to share and help.

Thanks
Regards.

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: hb stable- IS THERE ANY PROBLEM FOR STEM CELL THEREPAY?
« Reply #20 on: March 05, 2008, 05:36:45 PM »
I'd like to add that one time or occassional transfusions won't create dependency and are sometimes needed to maintain health during illness. Do not hesitate to take a one time transfusion if it is needed.
Andy

All we are saying is give thals a chance.

*

Offline Zaini

  • *****
  • 3448
  • Gender: Female
  • Life is too short to be perfect.
Re: hb stable- IS THERE ANY PROBLEM FOR STEM CELL THEREPAY?
« Reply #21 on: March 05, 2008, 05:56:52 PM »
 :agree With Canadian Family and Andy.

ZAINI.
^*^Xaini^*^

*

Offline mudit

  • *
  • 11
Re: hb stable- IS THERE ANY PROBLEM FOR STEM CELL THEREPAY?
« Reply #22 on: March 05, 2008, 06:38:23 PM »
Hey Micky,

We don’t want you to be depressed or loose any hope.
You are a source of inspiration for lot of us, we always look forward to your ever encouraging posts suggesting new treatment or advice.

I expect you would stay calm and take correct decision for your kid, I am not an expert but from what I have read and experienced so far is do not keep him at a low Hb < 7 for very long time.

You can try wheatgrass therapy; this may help as it has in most of the cases and esp. with kids.

I am sure with a never tiring dad like you, your kid has nothing to fear about, your son will recover soon, my family prayers are with you and your lovely kid.

Cheers,
Mudit

*

Offline kabir_love

  • ***
  • 163
  • Gender: Male
Re: hb stable- IS THERE ANY PROBLEM FOR STEM CELL THEREPAY?
« Reply #23 on: March 07, 2008, 10:34:42 AM »
thanx .. thanx  a looottt all of your for your support. i think that typing your replies you really prayed for me. and guess what.. my son had recovred.. he is really very much prefrect in last three days i saw 25% imporvment every day. and today really god helps he is fine..

we will test hb on suday and hope its recoverd.. but now i m soo much scared im doing the aftermath. and getting done his hla typing and checking the match for him  we hope we find is matched if gods really want to help us. i must have this done so that in future something like this happen i ll do the  BLOOD TRANSFUSION that day and next day go for the BMT.

hope the need dosnt arises.

thanks a ton for all of you.
micky

*

Offline kabir_love

  • ***
  • 163
  • Gender: Male
Re: situation changes for me...
« Reply #24 on: March 14, 2008, 11:54:20 AM »
finally what we not wanted is coming up.

we went to check our son to dr. thal. specialist. she check my son and suggested us for blood transfuse. his spleen is enlarge about 3-4cms. and liver also little bit  .. she said if we avoid this then later for future we dont have much chancnes for  stem cell or bmt. even if we have matching donor.  now just 2 days we have to decide what to do. well  i had done booking for blood transfuion and im giving my blood to my son. dr. mathur donsnt want us to do the blood transfusion and is annoyed by us, i m soo much confuse what we have to do. god knows.. 


*

Offline Sharmin

  • *****
  • 4155
  • Gender: Female
  • Little A
Re: situation changes for me...
« Reply #25 on: March 14, 2008, 03:23:15 PM »
Kabir_love,

You must do what is best for you son - you have entrusted your son's life with Dr. Mathur for this long! 
I am sorry to tell you that the blood transfusion, which you are so afraid of is not so bad.  Most children who are
transfused (as required) are healthier than your child is right now.

My son will be 10 years old this year - and (thank god) he has NEVER had an enlarged speen or liver.  In fact, doctors who don't know of his thalassemia are not able to detect any signs of his thal.   These children are happy energetic and capable, because they don't have low hg to struggle with.  Have you seen pictures of these beautiful children in the gallery?  You don't need Mathur - take care of your son - give him the conventional treatment for now and soon enough there will be easier - more valid forms of treatment - such as Hemaquest - where you don't need to make yourself and your child suffer -hoping that you can attribute some negligeable change in hg to this Rodex business.   This is only my opinion - we are on YOUR side Kabir - and on you son's side.   Maybe, Andy can give you an opinion as well. 

Take care and god bless,

love Sharmin 
Sharmin

*

Offline Zaini

  • *****
  • 3448
  • Gender: Female
  • Life is too short to be perfect.
Re: situation changes for me...
« Reply #26 on: March 15, 2008, 06:27:32 AM »
Quote
My son will be 10 years old this year - and (thank god) he has NEVER had an enlarged speen or liver.  In fact, doctors who don't know of his thalassemia are not able to detect any signs of his thal.   These children are happy energetic and capable, because they don't have low hg to struggle with.  Have you seen pictures of these beautiful children in the gallery?  You don't need Mathur - take care of your son - give him the conventional treatment for now and soon enough there will be easier - more valid forms of treatment - such as Hemaquest - where you don't need to make yourself and your child suffer -hoping that you can attribute some negligeable change in hg to this Rodex business.   This is only my opinion - we are on YOUR side Kabir - and on you son's side.   Maybe, Andy can give you an opinion as well.

Vey well said Sharmin,

I am of the same opinion,micky please stop this treatment and start taking care of your kid your self,once you'll transfuse your kid you'll see the difference,he will be energetic and will eat healthy,transfuse him on time and he will grow properly and will be able to enjoy his life to the fullest,plz think about it, i know you are spendinga big amount on dr mathur's treatment,and you said yourself you are not getting what you wanted,BLOOD IS A SOURCE OF LIFE FOR THESE KIDS this is atleast what i think,but when ever my daughter gets a transfusion i see a clear change in her attitude, she is more happy and joyful,she eats well. I am a thal minor and been a victim of low hb my whole life,i know how cranky and tired i feel when my hb is low,my body starts aching,so when i think about a kid with as low hb as 5,i can understand how they muct feel,these are not only words i really can feel it,PLEASE think about it micky, if you were getting benefited from dr mathur's treatment it was alright,but it's beena long time and you haven't seen any results,you can try wheat grass along with the transfusions,may be it will work and you'll have to give your son less transfusions.As Sharmin said about her son, same is the case with my daughter,physicians normally never detect her condition unless i tell them about it,she never had enlarged spleen or liver, Thanx to ALLAH.

ZAINI.
^*^Xaini^*^

*

Offline maha

  • ****
  • 424
  • Gender: Female
Re: situation changes for me...
« Reply #27 on: March 15, 2008, 07:28:30 AM »
Hi Micky
Did they say it was ok for you to be the donor for your son. Here they say it is better if the donor is not a close relative. Maybe Andy will come up with an explanation.
Take care
MAHA

*

Offline kabir_love

  • ***
  • 163
  • Gender: Male
Re: situation changes for me...
« Reply #28 on: March 15, 2008, 10:17:35 AM »
monday goin for 1st bt.   my son will cry a lot but. have to do it now...

regs
micky

*

Offline Smurfette

  • ***
  • 242
  • Gender: Female
  • Me and my Goddaughter
Re: situation changes for me...
« Reply #29 on: March 15, 2008, 12:16:50 PM »
I am sorry..why did you wait so long to transfuse your son?  :mad

Sorry but reading this article has made me alittle angry..I have no other comment just what I wrote above..


 

SMF spam blocked by CleanTalk