One month after starting hydrea...

HI Manal

It is good to hear that Ahmed's hb is improving.  Hopefully it will keep on increasing. 

Take care
Jade

Thanks Jade , i wish that very much

manal

Hi Manal,
I am so glad to hear that you son is doing well. I remember how happy and encouraged we were when Liv was on hydroyurea. I am so happy for you! How old is your son? Liv was a little over 2 when she started hydroxyurea. She was on it for about 2 years or so. She tolerated it well all her labs were always normal. I hope your son continues to improve    Best of luck! 
Just an update on Liv,
She is growing so much so fast! She is over 3 1/2 feet tall! She is still tiny to me she only weighs 37 lbs  . Last month, right after her tx she got pretty sick with a virus, we all did, she was vomiting and had 103* fever for 2 days so when we returned this month for her tx her hb was 7.9 her md wants to watch this to make sure its not going to a trend but she feels this drop was due to her illness. She began her 4th month of exjade so far so good. No side effects & the rise in her ferritin is not that much each month in comparison to before she was on exjade. I sould be getting her latest ferritin results today I will let you know. We are going back to oakland Aug 6th for her annual appt. I still struggle with my decision to begin tx. Its just so hard to be sure I'm doing the right thing. I will talk to you all soon Kathleen  Happy 5th Birtday Olivia

Thanks so much Kathleen i hope the same too. I will keep you updated


I am so happy to know about the development of Olivia, it is worth the world seeing our children growing. I think that Oakland with their expierence in addition to your observation will make the best decision for Olivia, will be waiting for your update.

Wishing our little princess a wonderful birthday



manal

Kathleen,

Its really good to hear that Olivia is doing great,you your self said that she is growing well so transfusion must be a right decision.

We did wish princess Olivia on her birthday here

http://www.thalassemiapatientsandfriends.com/index.php?topic=2662.0;highlight=happy+birthday+olivia

Happy birthday once again 

Zaini.

Hi everyone,
Thank you so much for your kind words. It is still kind of a shock at times for me that liv has thal.
Maybe that sounds weird maybe because we didn't expect this. We found out when Liv was around 2 so we have known for 3 years now but it still seems unreal to  me.  I guess that everytime we enter a new phase of her treatment it is like I'm hearing she has Thal for the first time. I guess the unknown is scarey to me  . Most of the time, I don't really think about it, we all go about our lives as if Liv didn't have Thal. even when she goes to the md every month it seems normal no worries, but for example her md was telling us that after a year of tx she will need to start going for more tests it just feels like wow she really does have Thal! In time that will become normal for us too. So I do question myself out of fear of the unknown which is something that I've been praying about. I'm trying to turn my fear into faith  . I wanted to thank eveyone for Livs birthday wishes she loved them. I didn't get to wish her a happy b-day on the site so I  wanted to too.  Thanks again soo much Kathleen 

Hey all,
I just got good news!!!!Olivia's ferritin went down from 1185 to 1084 I'm so happy this news is so encouraging
 
MY LITTLE ANGEL

Hi Olivia Mary,
Great to hear her S.fe results , ,  i m also so glad to hear this news ...
 
 
 

Best Regards
Take Care
Umair

Way to gooooooo. Congratulations dear, so hapPpPpPpPpPyyyyy for you
keep up the good work
manal

 

Kathleen,  that is great to hear - I hope that her ferritin continues to decrease

Best,

Sharmin

Kathleen.

Thats great news,the lower the ferritin in growing age,the better,it will help her grow normally.

Zaini.

Hi Everyone,
Does Exjade work by removing iron from the organs first and then from the blood? If so could this be why Olivia's ferritin is dropping? Althought it is dropping slow, could that be? She olny had 6 tx before she was started on Exjade. So I was thinking that maybe she dosen't have much iron stored in her organs and that is why it is coming down. Any information will be appericate.

Kathleen 

Hi Kathleen,

I think that must be the reason that Olivia's ferritin is going low,thats why getting started with chelation early on is good.

Zaini.

We are observing a trend towards chelation as early as possible. In the past, it was recommended that chelation should be started after about 20 transfusions, but new research shows that iron caused damage in the organs begins after just a few transfusions. We may eventually get to the point where chelation is begun with the first transfusion, as preventing iron buildup from ever occurring in organs seems most prudent.

By starting Olivia on chelation early, a condition of iron load in the organs can be prevented, so there is likely very little iron to be removed from the organs, so you are seeing the iron being removed before it gets a chance to start building up.

Keep it up Kathleen. I am really so happy fr Olivia

manall