Discussion Forums > Thalassemia Major
Update on Lil A
Sharmin:
Thanks Carisma,
I have been thinking of you and lil Ari as well :hugfriend The children's school year is wrapping up and we are moving to a new home in a few days. I will call you as soon as we get settled. I hope that everything is going well with you :hugfriend :hugfriend.
Sharmin
Sharmin:
Dear friends,
Lil A has been out of his cast for 3 weeks now. We leave for Oakland on Sunday. He will be seen by the group there and then we will drive to LA where he will be seen by Dr. Wood. We have enrolled him in a pancreas and pituitary study. I hope all of the results will be fine.
I will bring back any information Dr. Vichinsky and Dr. Wood have to impart during our visit.
We will miss you all and look forward to getting back to you soon,
Sharmin
Zaini:
Sharmin,
Bon Voyage my friend,i am glad that Lil A is out of his cast,i hope he is feeling better too,i am sure the results will be fine :hugfriend .Will miss you here :hugfriend .
Zaini.
Sharmin:
Thank you:) I'll miss you too! We're gone 2 1/2 weeks and I start school once we return. It's been a busy time!
I wish you all the best.
Sharmin
Sharmin:
I hope you all are doing well. Lil A's appt went well. His SQUID result was 700. Pretty good considering that we had to take away exjade for two months (due to extreme stomach issues - I would not recommend it under any other circumstances). We hope the next result is closer to 100 or below.
Dr. Vichinsky was very very caring and helpful as always. Lil A's vitamin D is better than before - but Dr. V wants it higher he put us on 50,000 IU a week for 8 weeks. He also wants lil A to have more zinc. Although his bone density is in an acceptable range he wants him to build more bone density right now to avoid problems when he is older.
He was very very optimistic this time around about the future of thals. About them living full lives, having children and being cured in the near future. He was optimistic about gene therapy and told us that a new oral chelator will be available next year. He said that combination chelation will be used a lot more now and that it is most effective and produces the least amount of side effects.
He insisted that all thal patients and families look into consulting counselling services as children grow and the responsibility shifts from the family to the patient. He also insisted that doctors talk to the patient rather than the parents at this age.
I am at a hotel and will write more once I get home.
I hope this is helpful to all of you.
Best,
Sharmin
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