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Difference

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Offline nice friend

  • Thalassemia Major
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Re: Difference
« Reply #30 on: December 12, 2009, 08:17:11 AM »
Abbas,
Good Luck ,buddy !!... praying for Najaf :) ....

Best Regards
Take Care
Umair
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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.
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Umair
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Offline Keep Smiling

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Re: Difference
« Reply #31 on: December 12, 2009, 07:49:46 PM »
hi,

i have just returned from Lahore, we got reports for Osmotic Fragility and Echocardiography,
everything was normal i mean both Osmotic Fragility and Echocardiography.
this concludes that Najaf does not have HS.
so doctor says it is Thalassemia....

She decided to take Najaf as Intermedia......
yet she advises to take HU and folic acid and avoid transfusions as much as possible....
she says the threshold for transfusion will be Hb 7....

Abbas
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Offline Keep Smiling

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Re: Difference
« Reply #32 on: December 13, 2009, 07:14:45 AM »
doctor has advised HU at the dose of 16.6mg/kg/day for Najaf.
will it work for Najaf????
Any information regarding the use of HU will be most welcomed  :biggrin

Abbas
« Last Edit: December 13, 2009, 07:41:07 AM by Keep Smiling »
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Offline Zaini

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Re: Difference
« Reply #33 on: December 13, 2009, 08:10:35 AM »
Abbas,

You are talking about Hydrea or Hydroxyurea? Manal's son is taking it right now,she'll be able to guide you more.

Hydrea or hydroxyurea is basically a fetal hb inducer,it induces fetal hb which in turn results in increasing hb level,but sometimes it works for some one and for some it didn't work,and there are a couple of tests which you should do regularly while on Hydrea,as it can lower blood counts.

Zaini.
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Offline Keep Smiling

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Re: Difference
« Reply #34 on: December 13, 2009, 08:52:49 AM »
yes i m talking about Hydroxy urea......... May it work for Najaf
which tests should be done regularly?????

Abbas
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Offline Zaini

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Re: Difference
« Reply #35 on: December 13, 2009, 03:59:38 PM »
Abbas,

It might work for Najaf,as she is being treated as thal intermedia,wait for Manal she'd be able to tell you more about tests and precautions.

Zaini.
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Offline Andy Battaglia

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Re: Difference
« Reply #36 on: December 13, 2009, 04:28:05 PM »
Abbas,

Hydroxyurea works to raise hemoglobin levels in many patients and is a long offered therapy for non-transfusing intermedias. It does seem to work better in patients who have a natural ability to produce higher than normal levels of fetal hemoglobin, so it may have a good chance of working here. Folic acid is an absolute must as it helps to build red blood cells. Since the child has been determined to be intermedia, I would assume the report of B+/B+ is accurate. This does often manifest as intermedia and with the high fetal hemoglobin level, it does give hope that hydroxyurea will help.
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Andy

All we are saying is give thals a chance.
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Offline Manal

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Re: Difference
« Reply #37 on: December 14, 2009, 03:02:23 AM »
Hi Abbas

I have answered your PM in details, please check it and feel free to ask anything that is not clear

Take care and good luck

manal
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Offline Keep Smiling

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Re: Difference
« Reply #38 on: December 14, 2009, 06:30:12 AM »
thanks Andy, Zaini and Manal for ur detailed reply.......

God bless u all...

Abbas
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Offline Keep Smiling

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Re: Difference
« Reply #39 on: December 17, 2009, 06:38:58 AM »
Hi,

last night i talked to my mother and she told me that Najaf is doing very well........
she looks more cute, even healthier.....everything is going right yet.

Abbas
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Offline Manal

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Re: Difference
« Reply #40 on: December 17, 2009, 11:56:28 AM »
I am glad to hear the good news Abbas, good luck and please update

manal
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Offline Zaini

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Re: Difference
« Reply #41 on: December 17, 2009, 05:43:28 PM »
Hi Abbas,

Glad to hear that,has she started Hydrea?

Zaini.
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Offline Keep Smiling

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Re: Difference
« Reply #42 on: December 18, 2009, 06:34:17 AM »
Hi,

yes she is on HU from last sunday.....

Abbas
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Offline Keep Smiling

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Re: Difference
« Reply #43 on: December 22, 2009, 11:54:26 AM »
hi,

Najaf is having problem in taking HU, she weeps a lot :rotfl
i think it is something like powder, i have not seen it yet. is it too much bitter or anything else, or should we mix in something like milkshake,juice etc?
another thing, should we start supplements for Najaf? today i talked to her doctor and she said supplements are not recommended for children of age 4...
what all of u say?

Abbas
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Offline Manal

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Re: Difference
« Reply #44 on: December 22, 2009, 02:43:11 PM »
Abbas,

Actually my son doesn't have any problem with HU in terms od taste. It is true that it does not disolve completly, some of the powder floats, that is why you should mix it very good before you pull the required dose to make sure that you are taking the medicne and not just water.

There is no problem mixing it with a something, but you need to make sure that the juice is completly swallowed

What i do is that i put 5ml of water, empty the powder in the capsule and mix it with water. After stirring, i pull with a syringe 4ml (this is my son's dose according to his weight) and i give them to him and throw the rest of the ixture in the glass.

As for supplements, it is very important to be on supplements especially thals as there bodies are in contionous need for vitamins because anemia put stress on the body and therefore these elments are quickly being depleted.

Please read the posts in the nutrition and supplements corner and feel free to ask anything that is not clear, but in short she must be on

1- folic acid
2- multivitamin and minerals (with no iron or vitamin C)
3- Vitamin E from a natural source (this is a required antioxidant)
4- Calcium, vitamin D, zinc and magnesium (usually found all togather and many of us use Osteocare, and it is found in syrup, chewable, tablets,..)
5- L-carnitine (given 5 days per week)


manal
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