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Appointment in February
Manal:
Dore,
I think you have to check the iron overload in organ through ferriscan (MRI on the liver) or T2*.
Also revising your supplements is a good idea too
manal
Manal:
Sharmin, congratulations dear, you deserve the best. You and little A have worked so hard, Way to goooooo
manal
:congrats :congrats :congrats
nice friend:
Hi Sis.
Congrats for you behind all this, there is a big effort/hand of you Well Done...
Lill A :congrats To you buddy you got alot of strenght to make anything possible ... Well Done buddy and keep it up , i want to more super news from you like this , i hope n pray that other reports will come better fine than this one ... dont forget to enjoy your staty budy okiey .
Best Regards
Take Care
Umair
Sharmin:
I have some answers to our questions. We will be in again tomorrow for cardiac MRI and DEXA so I will try to get more answers then.
1. Fetal hemoglobin is less efficient than adult hemoglobin because it delivers less O2.
2. Fetal hg inducers such as hydroxyurea are deamed to be quite safe with very little side effects.
3. and 4. L-carnitine - very good - Oakland is currently doing a study on L-carnitine and lipoec acid. We are starting Little A on 600mg of L-carnitine. L-carnitine protects heart tissue from iron damage.
5. only take vitamin C with desferal - usage with exjade is not the same and not recommeded
6. Treatment post spenectomy thals - baby aspirin, and cormadine is used to keep blood thin, antibiotics.
7. To avoid exjade related intestinal issues - can divide exjade into two doses - morning and evening. Can try taking it at night - on empty stomach.
8. exjade/L1 together - not studied.
9. magnesium bilirubin - sorry didn't get to this question
10. PK def - will ask tomorrow
11. DEXA scan - when done in a big pediatric setting is useful because they have the data for young children. We are doing one tomorrow. Boys more susceptible then girls to bone loss issues. We declined today's appt - but after speaking with doctor decided to go through with it.
We had a lot to deal with our tests etc. trying to devise future treatment and chelation schedule - but in the scheduled appt time I tried to get as far down the list as possible before time ran out. I will try to get remaining questions tomorrow.
Andy, we saw a different doctor from the team today - she also stressed that the future of thalassemia treatment is antioxidants. She was impressed that I asked for L-carnitine and was very eager to help me guide me with it. Thank you so much for guiding me in asking for help in Little A's treatment - it made a world of difference. Thank you again.
Sharmin
Zaini:
Sharmin you did a great job :hugfriend SQUID results are indeed a good news,after a long journey of chelation,you and Little A deserved it :hugfriend.
Thanks to Andy our kids are already on antioxidants,while doctors are researching on them.
What makes me feel sad is in countries like mine,how can we determine any deposition of iron in organs when SQUID or ferriscan is not available :( .
Zaini.
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