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Regular
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| Hi there! Sorry its been so long. We were in the hospital for 3 days, thet ran so much blood work they busting there butts to find out so they could try and keep us in the area and then get surgery dine on the 23rd. But they want to wait till Jan. What we found out is that Bradley has Von Willibonds Defiancy factor and 8 and 9 defiancy clotting factors. The Hemotologist have never seen these two factors together. They called there Mentors around the world, NYU, and docs that have been retired to ask and then thats when they stared calling Bradley a very interesting little boy! There were docs and nurses coming to meet him!! I cant say enough about CHOP and there Doctors! The lab work that Dr.Campbell did on monday is what showed the clotting factor issues. which to come find out they called the hospitals in Ohio to see if they ever have did the clotting factors test and they never did!!! Bradley has had three surgerys and they said he was very lucky to have made it thru those!!!!!! I asked the DR what would of happened if this test was not done and he put it very bluntly Bradley would of bled out on the table!! So we are so grateful for Dr. Campbell and all the Docs at CHOP!!!! So we are staying positive because we have him today  So please to all parents please make sure this test is done before surgery and ask your Doctors if it has ever been taken! It is so important we make each other aware of these issues!!!!! |
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Expert
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Location: Utah | Thanks for the Bradley update. I'm very happy to hear you have a good diagnosis and can work around that for future surgeries. I have a teenage relative who was recently diagnosed with a clotting factor condition (not Von Willebrand, but one of the other Factor conditions). His family had no idea they had this. His mother has a similar condition but won't consider treatment. Once my relatives helped this teenager, he is much healthier and has more energy and a better quality of life. I'm sure Bradley will keep you on your toes, but good to know there is an answer for these things.
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Expert
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Location: Plymouth, Pennsylvania | I AM SO HAPPY TO HEAR THAT THEY FOUND THIS, AND IT CAN BE TREATED....
YOU CERTAINLY ARE IN 'THE BEST' OF HANDS...AND YOU ARE RIGHT...WE NEED THIS
INFORMATION HIGHWAY'....
KEEP US POSTED, AND KNOW THAT BRADLEY IS AND WILL REMAIN IN OUR CONTINUED PRAYERS...
DANETTE, WHAT IS BRADLEYS 'DIAGNOSIS'...? ZOE IS A VATER/VACTERL KIDDO?, AND I AM CURIOUS ABOUT BRADLEY....
SOME OF THESE SYNDROMES, ASSOCIATIONS, HAVE THE MULTI ANOMOLIES...SOME WILL GET ALL, SOME A FEW, ECT...AND SOMETIME SOMETHING ODD WILL POP OUT LIKE WITH BRADLEY...FOR ZOE I WARN OUR 'VATER COMMUNITY ABOUT 'MAL-ROTATION OF THE INTESTINES'...LIKE BRADLEY FOUND WHEN ZOE WENT FOR THE 'VEPTR IMPLANT', AND THEN THEY FOUND THIS LIFE THREATNING SITUATION WITH HER...SOMETIME, GOD PUTS US IN THE 'RIGHT PLACE' AT THE 'RIGHT TIME'...HANG IN THERE, AND KNOW WE ARE HERE IF YOU NEED US....AND KEEP US POSTED...
GOD BLESS.... |
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Regular
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Location: florida | i am glad to hear that they found this before surgery! and thank you for the information! logan has had 6 surgeries/ procedures done and i just found out last week when i was calling the hospital for logans blood type that they never checked for his blood type! |
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Member
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Location: Central New Jersey | DStepp,
I have to tell you, my wife and I met Dr. Campbell on 11/12 for our first consult with our 10 month old Callum and he had mentioned that a patient had a clotting factor problem recently and ordered a full blood work-up right then and there for our son. We have just started out on this long road but are comforted by knowing that the Doctors and Staff at CHOP are not afraid at admitting that every case is a learning opportunity, Bradley's case may save another child's life. |
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Regular
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| Hi there! Yes I am sure he was probably talking about Bradley!! We were still in the hospital!!! Yes the staff at CHOP is so amazing. We got our new Surgery date Jan. 18th!!!!!!! Thanks for all the thoughts and prayers everyone! |
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Member
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Location: Central New Jersey | Hi i am Callum's mom Wendy. New to all of this but from what i read you guys go to chop in penn. too and Dr. Campbell is your dr. too right? We finally got our MRI appt. did you guys get that test done here too? Look forward to talking to you. |
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Regular
Posts: 78
| Hi there! Yes he did and Dr. Campbell is Bradleys Doctor. When is his appt.? |
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Member
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Location: Central New Jersey | Hi his appt is on the 29th now for MRI. So nervous but Brian the nurse is so great! Dr Campbell seems amazing!!
Here is my email address cause sometimes this site freezes on me.
[email protected] |
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Regular
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Location: florida | good luck to callum! |
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | HI WENDY, JUST WANT TO MAKE SURE YOU KNOW THAT THERE IS A SITE ON FACEBOOK...VERY ACTIVE...IF YOU HAVE NOT ALREADY, DROP BY...GOD BLESS....http://www.facebook.com/groups/56052176312/ |
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Regarding Bradley surgery
