our son, the medical anamoly.

so we got e's blood results back from his lab draw this week. first, his factor level was above 1% after 72 hours which i am told is what they want to see. so, yay. the two tests he got (the lupus anticoagulant and the mono test) were hopefully going to solve the mystery of the decreasing factor level. but...its not to be. both tests came back negative.

so. back to the drawing board.

currently, evan is under the care of the oldest doctor in the practice (i'm going to guess he's about 70?) and sara (the nurse, not me) said that he told her he has never seen this before. i assume he means the levels decreasing, a positive test for an inhibitor and no medical explanation.

it was decided that we would try immuno-supression for the week. i gave him his regular 1250 friday dose, and will be infusing him with 1000 units every day for the next seven days. that puts us out to next saturday. then the following monday i will take him back to st. joe's where they will draw more pre-infusion blood and do the mixing study again to see if he still comes back positive for an inhibitor.

michael and i are thinking that if he does come back positive for the inhibitor that we are going to consult a second opinion. i feel weird saying that, because i love the practice that we go to. and i love sara so much too. and i hope this sort of thing wouldn't hurt their feelings, but i feel like maybe we need to see if someone else can help us solve this mystery.

poor boy is only 21 months old and i already long for the days of the 5.9% levels.


joanne said...

I hope everything works out hunny. The pictures of your son are just so cute =)
I would get another opinion if I was you it cant hurt and I dont think that you have to tell them. We live in NY and we go to the Hemophilia treatment center at Weill Medical College of Cornell University
Regional Comprehensive Hemophilia Diagnostic
and Treatment Center
525 E. 68th Street, Room P-695
New York, NY 10021 HTC ID: 052
Region: Region II
Phone: (212) 746-3418
Fax: (212) 746-8986
You can call them maybe they can help you over the phone the DR that we use is world know she is really good My brother is 24 now and had an inhibitor when he was about 4 to 6 years old and they fixed it he does NOT have it no more
Hope this helps good luck

zaphod ~~ just this guy, you know? said...

Just a note from a mom of twins with inhibitors in various stages of activity-- it is possible to have an inhibitor and NOT be able to get a Bethesda level on it!
My little guy Connor is currently on ITI for his inhibitor and as of yesterday he finally has no measurable inhibitor level. All this means in my guys is, you can't see it by current testing, but 45 minutes after we dose C with 200% replacement of factor, he has only 76% left in his system & at the 48 hour mark, he has <1%, or basically nothing at all.
Now, we are thrilled at the 76%-- this is his HIGHEST recovery in well over a year...
Good luck with your labs-- and if it is an inhibitor, I'll be happy to chat... or even if it isn't!