Discussion Forums > Thalassemia Major
Question for Andy...
Bostonian_04:
Just reading thru the post...My 3yr old got MRI and T2* done in Children's Boston when she was 2.5 yrs old for baseline heart and liver iron. Since she is too young, she had to be given anesthesia.
Emby:
Bostonian_04 i hope your little daughter is well. It is good to have T2* done at a young age for a child especially for a parents peace of heart and mind and efficiency in addressing any issues.
Hoping she would not need anesthetic in future.
Emby
Andy Battaglia:
I want to follow this up with information acquired at the NYC conference. I posed this question to Dr John Wood, who is very cooperative at every conference and he told me that the goal now is to do the first scan one year after transfusions begin. This will usually mean the child has to be sedated, but the benefit of discovering any early iron loading issues far outweighs any concerns over the child's reaction to having to be scanned. This is just one area where there is a constant evolution in the thinking about how to approach various issues in thals and it's great to hear the doctors talk about the progress being made in understanding how to best manage thalassemia treatment. I know everyone is anxiously awaiting a cure, but we do have to deal with what is and having these improvements makes a great difference in the management of thalassemia, which leads to better quality of life for thals.
Bostonian_04:
--- Quote from: Emby on October 24, 2009, 10:54:40 PM ---Bostonian_04 i hope your little daughter is well. It is good to have T2* done at a young age for a child especially for a parents peace of heart and mind and efficiency in addressing any issues.
Hoping she would not need anesthetic in future.
Emby
--- End quote ---
Hi Emby,
Thanks, my daughter is doing well ..... she is scheduled for her annual CMR for T2* and liver iron (R2*) this December. Since she is a toddler, she would have to be anesthetized for the procedure this year as well. I guess this will be the case for the next few years as well till the time she grows up enough to lie still during the procedure ....
Bostonian
Emby:
Hiya Andy,
Yes the final decision is with the patient.....but then when i am making clear my decision why does my boys Doc look at me as if I'm from another planet !! :biggrin
Hope you are keeping well Andy. I know from some of your posts that you have been not too well......you are a diamond Andy (or are tanzanites worth more!?!) may God have Mercy on you and keep your light shining the brightest!
I need to ask something about our boys. They have both complained about this to their Doc. I would like to know your opinian. This morning my eldest got up with a slightly uncomfortable feeling in his chest. He went off to college as usual leaving us in anticipation of how went his first day of exams. He text us to say it went well except that he had an excruciating back pain. He was relieved to have made it through exam time. The feeling of tightness in his chest travels down to the lower back, causing it to pain and making it difficult to breath.
Their ECG has always come back normal and their cardiologist has said that this was nothing to worry about. Could this be just muscle spasms? what do you think? It always starts that way with discomfort in the chest receding to lower back with difficulty in breathing and pain that could last for anything upto 5 minutes to half an hour.
Would love to know what your opinian is on this.
Emby
Navigation
[0] Message Index
[#] Next page
[*] Previous page
Go to full version