One month after starting hydrea...

  • 107 Replies
  • 75534 Views
*

Offline Manal

  • *****
  • 3100
  • Gender: Female
  • mother of thal intermedia child
One month after starting hydrea...
« on: March 09, 2009, 12:34:42 AM »
Today, i did the CBC, liver and kidney functions afterone month of taking hydrea 20mg/kilo

The HB is 7 (one gram increase, it was 6.1 last month)
Hematocrit is 22% ( last month was 19.3%)
MCV is 57 (last month it was 53)
Leucocoytic count 6,300 ( last month it was 7,700)
Total Bilirubin 2 (last month 2.4)
Retic count 6.2% (last month 7.8%)

All kidney and liver functions are normal

The spleen is enlarged by 4cm  (last month it was 6cm and we never reached 6 before that is why i got the feeling that the spleen will be out of control and that is why i was so encourged to start hydrea)

Generally, he looks better

manal

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: One month after starting hydrea...
« Reply #1 on: March 09, 2009, 01:05:42 AM »
That's a really good start, Manal. Everything is positive. I hope this can make enough difference to keep him from needing transfusions.
Andy

All we are saying is give thals a chance.

*

Offline nice friend

  • Thalassemia Major
  • *
  • 2836
  • Gender: Male
  • If I Can, Why Not You??... If I Can U TOO !!!...
Re: One month after starting hydrea...
« Reply #2 on: March 09, 2009, 01:15:38 AM »
Hi Manal ,
i m very glad to hear Ahmed's good Reports , yeah its a good sign that his Hb has increased , i hope to hear super news like this one, in future as well . Wishi You, your Family and especialy to Ahmed All the best  . :goodluck

Lots of Good wishes
Best Regards
Take Care
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

*

Offline Manal

  • *****
  • 3100
  • Gender: Female
  • mother of thal intermedia child
Re: One month after starting hydrea...
« Reply #3 on: March 09, 2009, 01:16:11 AM »
Thanks Andy. I hope the same too.

When i used hydrea in 2007, i didn't see any increase in HB ( only MCV were the increasing) except in the fourth month from administration but this time it is different, hope this trend scontinues.

Andy, how long it takes to reach the maxiumum HB, or there is no rule for that???

manal

*

Offline Manal

  • *****
  • 3100
  • Gender: Female
  • mother of thal intermedia child
Re: One month after starting hydrea...
« Reply #4 on: March 09, 2009, 01:17:31 AM »
Umair, thank you dear for your wishes. They mean the world to me :hugfriend

manal

*

Offline nice friend

  • Thalassemia Major
  • *
  • 2836
  • Gender: Male
  • If I Can, Why Not You??... If I Can U TOO !!!...
Re: One month after starting hydrea...
« Reply #5 on: March 09, 2009, 01:22:44 AM »
 :biggrin :biggrin :biggrin
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: One month after starting hydrea...
« Reply #6 on: March 09, 2009, 02:09:02 AM »
Manal,

I have read that it can take up to two years to see the maximum effect of hydrea. There is no rule, however. Each patient reacts differently and I think you are seeing that even in the same patient, things can vary. This may be related to something else he is also taking or even to his diet. If he is eating better now, that may make a difference. One thing evident from the article I posted about HQK-1001 is that the effect of hemoglobin inducers can be enhanced by using in combination with other blood promoters, and even iron supplements. I am not suggesting using iron at this point, but what was found was that even in cases where iron stores were high, adding iron resulted in a higher increase in Hb. The stored iron is not released easily and is little use in building blood. By adding iron, they provided the iron necessary for manufacturing new red blood cells. I have also read of another study where iron was given to intermedias and in spite of existing iron load, adding iron raised the Hb. Obviously, this would need much more study before anything is recommended, but it does seem that there has to be some dietary iron to build red blood cells. I would think that this also means that supplying the body with other supplements needed to make blood, like folic acid and magnesium, would also help raise Hb when used along with Hb inducers.

One question. Is Ahmad's diet any different than it used to be? Does he have more appetite for nutritious foods or even possibly, foods high in iron, like meats?
Andy

All we are saying is give thals a chance.

*

Offline Sharmin

  • *****
  • 4155
  • Gender: Female
  • Little A
Re: One month after starting hydrea...
« Reply #7 on: March 09, 2009, 02:57:56 AM »
Manal,

I am so glad to hear that Ahmad's hg has increased.  I hope that you see continued improvement with the hydrea.  I am also glad that his spleen has decreased in size. 

Take good care, I hope to continue hearing good news about Ahmad,

Sharmin  :hugfriend
Sharmin

*

Offline Zaini

  • *****
  • 3448
  • Gender: Female
  • Life is too short to be perfect.
Re: One month after starting hydrea...
« Reply #8 on: March 09, 2009, 03:22:24 AM »
That's a great news Manal, :hugfriend this increase in hb is good,i hope the trend will continue.
What Andy said about adding iron makes me curious,are Ahmed's iron levels low or high?

Zaini.
^*^Xaini^*^

*

Offline poo gill

  • ***
  • 247
  • Gender: Female
Re: One month after starting hydrea...
« Reply #9 on: March 09, 2009, 09:48:07 AM »
Congrats Manal. I am thrilled to see the increase of Ahmad's Hb.

Love

Puja
"We are like angels with just one wing. We can only fly by embracing each other." 

*

Offline maha

  • ****
  • 424
  • Gender: Female
Re: One month after starting hydrea...
« Reply #10 on: March 09, 2009, 11:43:50 AM »
Hi Manal
Glad to hear Ahmeds hb has hit 7hg/dl again. One month previous to using hydrea his hb was in the 7 range. So probably hydrea can do better and his hb next month be even better.

maha

*

Offline Manal

  • *****
  • 3100
  • Gender: Female
  • mother of thal intermedia child
Re: One month after starting hydrea...
« Reply #11 on: March 09, 2009, 09:53:51 PM »
Thank you everyone for your wishes :hugfriend :hugfriend

Andy
Actually his diet didn't change a lot, he is even very picky and takes a lot of effort to make him eat what i find good for him, but generally he loves meat and many times he asks for another portion. In addition to food and supplemts, he still takes the carao, aloe vera (not daily) and i will start giving him the nigella oil in two days.

Zaini
Two months ago his ferritin was 62

Maha
Yes Maha it was the only time he hit 7 with no inducers, i was going to give him a chance without hydrea but as i said i was afraid the spleen will be out of control and at the same time i remember you had told me once that he needs to grow and that everything that can help him should be given at the same time, your advice had helped me to see the broader point and made a lot of difference, thanks

Thank you all for everything :hugfriend

manal

*

Offline Sharmin

  • *****
  • 4155
  • Gender: Female
  • Little A
Re: One month after starting hydrea...
« Reply #12 on: March 11, 2009, 07:26:21 PM »
Manal,

Are you going to give him nigella oil instead of seeds?  Is nigella oil just as good as the seeds?  I have seen nigella seed oil capsules, but I assumed that they may not have been as potent as the seeds.   Is there a difference?

I hope that Ahmad has good results with all of this.  I think that nigella has really helped little A in the short time that he has been taking it.  He also has colostrum lozenges which I think are good for him too. 

lots of luck,

Sharmin


Sharmin

*

Offline Manal

  • *****
  • 3100
  • Gender: Female
  • mother of thal intermedia child
Re: One month after starting hydrea...
« Reply #13 on: March 11, 2009, 11:38:45 PM »
Hi Sharmin

Actually i was starting to investigate if there is any difference or not, but couldn't yet findanything straight. All what i can find is the recipes, foe example:
Nigella seeds with honey .....for autominue disease (what little A needs)
Nigella seeds with milk..........for jaundice
Nigella oil on skin..................for psoriasis, nails, baldness
Nigella oil mixed with honey...... for asthma, cold, flu and fatigue
Nigella boiled with vinegar......for teeth and gum pains
Nigella spoon boiled in water..... as a drink

http://www.kitchendoctor.com/articles/blackcumin.html

and so on, i also found a very good study about the difference between the seed, fixed oil, aroma oil.... but it was not available to everyone, sarcasticlly it was done in Egypt as it is assumed we have the best Nigella here for cultivation reasons
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T6R-4846JJH-1M&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=2d3e10db8cc785f08d4b5682ae31f127


So i am still searching if there are any difference and of course i will updateyou if i find anything.

 What made me want to try the oil is that it was hard to convience Ahmad taking the seeds and i just didn't want to pressure him cause i am already doing this with carao, but definetly i will try again but later on

Manal
« Last Edit: March 12, 2009, 06:57:23 PM by Manal »

*

Offline Sharmin

  • *****
  • 4155
  • Gender: Female
  • Little A
Re: One month after starting hydrea...
« Reply #14 on: March 12, 2009, 05:18:26 PM »
Thanks Manal,

I didn't know all of the uses of nigella.  I will get the oil for my daughter's nails.  I am giving it to her orally right now to make sure that she does not develop any (autoimmune) skin related problems - do far her skin is great but because her nails are dry I don't know if her skin could eventually be affected. 

Sharmin
Sharmin

 

SMF spam blocked by CleanTalk