Olivia update

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??? 
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 

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.   

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

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.   

Excellent decesion

manal

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

Hi everyone.....
We hope all is well with everyone.....As Christine said Olivia has had another increase in her Hgb . 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. 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.

Love Kathleen

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.

Hi Kathleen,
                Its great to hear that Olivia is responding to hydroxyurea.


These are for Olivia:
 

RIYA

Dear Kathleen  :hug


Sooooooooooo happy for this progress. Congratulations

Kathleen , thanks for the advice and your wishes for my son. Next month i will discuess with the doctor when it will be suitable to start. I will keep you updated.

As of now give Oliva the biggest hug for me   

Manal 

Hi everyone,

Thank you so much for your support!
Manal, please do (as you always do) keep us up to date. I would love for you and your family to have the same results as us and to just have the feeling that your child is okay. We do not know what the future holds for Olivia, in a way I cannot worry about the future because I cannot see the future or change what will be and I have 2 other children that need me I can't waste all of my time worring it makes me so tired and then I am a mess. We all try to live in the day (as far as Olivia's health goes). I do know that today was great! Olivia was great and I do believe that it is beacause of the hydroxyurea and all of our prayers and positive words and thoughts.
Also I have been talking with the president of the parent teacher org. at my daughter's school and we are planning a blood drive in March of 2007. I will let you know how this is going.

Our love and prayers to all......
Kathleen

Great news! 

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

I'm not sure of any Majors using hydroxyurea, so I'm not too familiar with it.  The only thing that I do know, is that Majors do not make their own hemoglobin, or make very little of it, depending on their transfusion history.  So, hemoglobin inducers don't seem to work, when the body isn't capable of making the hemoglobin in the first place.  That is why medications like Procrit/Epogen are not used in Majors.  I'm not positive, but I cannot see why it would hurt, unless there are dangerous side effects associated with it.     I would talk to a doctor who is knowledgeable about it, first.