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| National Institute of Health |
We met with nurses and doctor this morning as
they drilled me on Patrick's Medical History... My charts of his fevers and the
binder made them instantly impressed! Upon the arrival of the team of
doctors...they were to discuss his case and then send one doctor back in...but
they just piled in...9 doctors in a very small room. At this point it felt like
I was in an interrogation room...very intimidated. I did feel a little star
struck as well meeting the doctor whom is the leading researcher in this field.
Patrick, in what this was the 5th hour, sunk in his chair and asked for Bear...this
his security. He was clearly not at all comfortable.
They repeatedly thanked us for joining the study where at this point I wanted to burst into tears thanking them for possibly some hope...
They did say he does not have TRAPS...he tested negative but 60% of the cases test negative. The reason the whole team wanted to meet with us is that there is a rare condition that echoes TRAPS but is not...they have 5 children who have portal hypertension, enlarged spleen, low platelets, diarrhea, and fevers...in order to determine if he falls into this is to do a whole genome/ exome sequencing (DNA test)...it will take a year for the study to be completed. And once this is completed it may not necessarily be a concrete answer being that there are only 5 cases.
We are scheduled to see their liver doctor tomorrow morning and hematology/ oncology in the afternoon followed by some blood work ups.
It is has been completely exhausting today and more of the same tomorrow but glad to have the opportunity to sit down with these specialists!
Prayers for strength and calm...and for Patrick's will to continue...he told me he is going to crawl under the bed tomorrow so I can't get him.. Because I'm too big ya know!
They repeatedly thanked us for joining the study where at this point I wanted to burst into tears thanking them for possibly some hope...
They did say he does not have TRAPS...he tested negative but 60% of the cases test negative. The reason the whole team wanted to meet with us is that there is a rare condition that echoes TRAPS but is not...they have 5 children who have portal hypertension, enlarged spleen, low platelets, diarrhea, and fevers...in order to determine if he falls into this is to do a whole genome/ exome sequencing (DNA test)...it will take a year for the study to be completed. And once this is completed it may not necessarily be a concrete answer being that there are only 5 cases.
We are scheduled to see their liver doctor tomorrow morning and hematology/ oncology in the afternoon followed by some blood work ups.
It is has been completely exhausting today and more of the same tomorrow but glad to have the opportunity to sit down with these specialists!
Prayers for strength and calm...and for Patrick's will to continue...he told me he is going to crawl under the bed tomorrow so I can't get him.. Because I'm too big ya know!
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