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Olivia update

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Christine Mary:
Hey All,

Great news! Kathleen just called me from the drs office and Olivias hgb went from a 9.2- 9.9 in one month!!!!!!!!! Plus her mcv level went up from a 63-73.
The md couldnt even feel her spleen.(which was about 1cm enlarged last time).
Obviously the hydroxyurea is working. They are doing another electrophoresis test on her? We are not sure why???  :dunno
Another interesting factor is Olivia has had a virus (she lost 2 lbs) this past few weeks. So who knows if her "true" hgb is higher?
Who cares?! Right? LOL  :biggrin

My motherly instinct regarding Lauryn is to do the DNA test. Because, if for some reason I start to  tx her and she can be an intermedia, (and she could've started hydroxy) i'll be so mad.  :mad  :huh

I know I've asked this before, but if I wanted Lauryn to "try" hydroxyurea, could it hurt? Major or not????

Have a good day,
Christine

Manal:

--- Quote from: Christine27 on November 29, 2006, 07:24:14 PM ---My motherly instinct regarding Lauryn is to do the DNA test. Because, if for some reason I start to  tx her and she can be an intermedia, (and she could've started hydroxy) i'll be so mad.  :mad  :huh


--- End quote ---

Excellent decesion :thumbsup

manal

Sharmin:
Hi Christine,
I would do the dna - in order to make the best decisions for your daughter you need to be equiped with this information.  We had a dna test for our son and it gave us the information we needed to make our decisions.  It sounds to me like your daughter may be intermedia, and i say this because she seems to be presenting differently than my son - of course that is not definitive but by 12 weeks my son had lost the pink in his skin and his spleen was slightly enlarged.  Really, this is the time to figure things out because Lauryn has not started any form of treatment yet and does not seem to be in need of tx at this time. 
I'm sure you'll do what is best,
Sharmin

olivia mary:
Hi everyone.....
We hope all is well with everyone.....As Christine said Olivia has had another increase in her Hgb :yahoo . We are so happy! All of her counts we good as well. She did lose 2lbs this week :'( we all lost some weight due to a bad virus, She is eating very well now and has gained 1 lb back. :woot Once again, before the hydroxyurea she would have been in the hospital but I was able to care for her at home and she did fine just like my ohter children and her hgb went up......this has never happended. Also, the highest hgb we have on record was a 9.3 when Olivia was 8 months old. Manal I hope you try hydroxyurea it has made a  big difference in Olivia's (and our) life. She has gone from a 6.3 to a 9.9. I really believe in my heart that you son will benefit from it. :heartpink

Love Kathleen

Andy Battaglia:
That's such good news Kathleen.

I do feel that raising hemoglobin levels is the best approach to thal. It eliminates most of the thal caused problems and has the least side effects of any other therapy and also shows great potential if only we can get research money committed for research into better hemoglobin inducers.

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