should i worry?

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Offline Christine Mary

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  • Mother of Lauryn, who has Thal Major
should i worry?
« on: February 06, 2008, 06:12:17 AM »
hi andy  :bighug

question.lauryns ferritin was 866 in sept after 5 tx's. she is up to 8 txs to date. she has been lasting in between tx's around 6-7 weeks .(btw is that good)?

anyway her spleen is 4 cms and her ferritin dropped from 866 in sept to 5 something in dec. now she is at 691. when exactly does chelation start ? and her hemos want to start her on exjade when her ferritin reaches 1000.( approximatley when does that start? can her ferr. drop again?) is this the right thing to do?
im anxious and very nervous about this new chapter in our lives.i am having a hard time dealing with this.

thanks in advance for any and all advice!

love,
christine

Lauryn's Mom

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Offline Andy Battaglia

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Re: should i worry?
« Reply #1 on: February 06, 2008, 06:37:35 AM »
Hi Christine,

Exjade is approved for ages 2 and older in the US. Its safety has not been established for younger than that. I think the recent experience of Canadian Family points out that there may be some problem getting young children to drink the sufficient amount of water or juice with exjade dissolved in it. Normally chelation begins in the 1000-1500 ferritin range. Ferritin readings will fluctuate and it doesn't mean much. As long as it remains low, there is no rush to begin chelation. 6-7 weeks is a good transfusion  interval, but she's still young and her blood demand is low. As she gets older, this interval will shorten, but it's still too early to see where it will settle. How has her Hb been between transfusions?

Beginning chelation has always been somewhat traumatic for parents, but with oral chelators it's not as difficult. Most parents have had to learn to put a needle into their child on an almost daily basis. The new generation of thal parents will largely avoid this. I'm really happy you won't have to go through this. Things are changing and when you look at how much progress has been made in treatment over the past 20 years, you can have a lot of confidence that things will be even better as Lauryn grows. We're always here whenever you feel anxious or down and I never see anyone give anything but support here when it's needed. There's a lot of parents of young thals here who have recently gone through what you are now. Perhaps some of them can share how they deal with each new step on an emotional level.
Andy

All we are saying is give thals a chance.

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Offline maha

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Re: should i worry?
« Reply #2 on: February 06, 2008, 06:45:20 AM »
Hi Christine
Chelation usually starts when the ferritin reaches 1000, but the age of the child also matters. Exjade can be started only when the child is 2 years old, and if I remember right little Lauryn will turn 2 on sept. Some say it takes just about 20 transfusions for the ferratin to reach to levels that it requires chelation. My sons ferratin after 5 transfusions is at 550. The doc suggested desferal via IV the next time he comes for transfusion, but again he is a good three months away from his 2nd B`Day. It is normal for the ferratin to go up and down. Hope this helps
regards
maha

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Offline Miaki

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Re: should i worry?
« Reply #3 on: February 06, 2008, 01:51:56 PM »
Hello Christine

Good to hear that little Lauryn is doing well. Each new stage for you guys is a waiting game and i guess very hard. All I can say is you doing such a great job and chin up.

Lauryn is too young to start chelation yet. As Andy and Maha have mentioned she must be over 2 to start chelation and her ferretins are still ok.

Just wish u all the best and we are here for u.

Miss ya heaps and kiss the little one for me plz
Miaki

 

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