Discussion Forums > General Chatter
One Year follow up
Zaini:
Sharmin,
Ferriscan or T2* isn't available in our country,so right now we just have to depend on Echo,ultrasound or MRI :dunno Hope thses technologies will be available soon,there is a great number of thals in Pakistan who can benefit from these technologies.
Zaini.
nice friend:
Sharmin ,
Good luck with Lil-A's annual check-up .... :goodluck wish that everything will be fine :) ....
lots of Best Regards
Umair
Sharmin:
Thank you all for your wishes and support. We have had our one year follow up. Things look good at this time. The SQUID results revealed that lil A's iron level is 943 - which is an amazing result. The clinic was very pleased that the combination therapy - with very good compliance has been very successful. We have decided to discontinue desferal, at least for the time being (perhaps permanently) and to give lil A the maximum dose of exjade (30mg/kg). We arrived at home last night, so we are waiting to arrange exjade here so until then we will continue with desferal.
The docs are happy with lil A's progress and they feel that he is very healthy at this time. The presence of the antibody is an issue and they do not think that continuing with rituximab is a good idea. Another child was given ritux with steroid treatment - and that child overcame antibodies completely. In our case that didn't happen. Even though the antibody problem became less significant it did not diminish. The docs in Oakland say that we need to come up with a better solution because giving more ritux can cause damage to the B cells. Transplant was given as an option. Of course we are very afraid of transplant and have come home with a lot to think about.
In the meantime, I am glad that lil A is healthy at this time, and we are hopeful that the antibodies do not pose a big problem. We are also happy to be free of desferal - for a period of time, maybe permanently.
Any and all progress that we have made, we owe to Andy and this group. Lil A would not be in the great health he is in, and he would not be receiving this wonderful care if it weren't for Andy and this group. Thank you from the bottom of our hearts Andy and everyone else here.
I will post more details from our visit soon.
Thanks again everyone,
Sharmin
Zaini:
Sharmin,
I am extremely happy for Lil A, :hugfriend i wish and i hope that every thal in this world would be as healthy as him,you are really lucky that you had the chance to visit such a wonderful thal center.
What is going on with Lil Z's Sgpt levels has got me thinking that may be if her doctors were willing to try desferal with Asunra,it would have lowered her ferritin much much faster and we might have been able to avoid this situation :( ..
Zaini.
Dori:
Dear Zaini, dont think in if and do NOT blame yourself. Everythink possible is crossed for you. Hugs from me and the cat to your daughter and you.
Your daughter is not the only one. Exjade is the one to blame.
i am glad to hear that Sharmin!!!!! Im bit confused about the anti body thhing. I pray they find an easier treatment than transplant.
Have à good new week,
Dore
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