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Back from the dr appt in regards to my daughters blood clots....

Posted by on Mar. 13, 2013 at 1:52 PM
  • 11 Replies

Back from the Ambyr's dr appt. Things are ok. She does indeed have Factor V a clotting disorder), which is genetic and they did a test for that and they know that because of the type of mutation she only got it from one us, Tom or myself. The clots are superficial and they can't move up into the lungs, etc... There is another test that popped up that she wants to retest in May with a wider range of parameters, if that comes back negative then it will mean Ambyr is even more less at risk for developing deep vein thrombosis which means she will be at risk for the clots to form in the arteries and they can move up. If it comes back as positive they will retest once more 12 weeks later. So Tom and I need to be tested, however because of my history and my family history she believes I will be the carrier. The doctor was great, she spent so much time with Ambyr. Glad the appointment is over. Right now Ambyr is laying on the floor with her legs elevated above her heart and the cat has decided she wants to lay with her......PROBLEM, she's allergic to the cat :(

by on Mar. 13, 2013 at 1:52 PM
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Replies (1-10):
matreshka
by Ruby Member on Mar. 13, 2013 at 2:52 PM
1 mom liked this

I'm glad you got some answers, I hope there is something the docs can do!

lyrick24
by Ruby Member on Mar. 13, 2013 at 3:40 PM
1 mom liked this

 i hope they figure out all that is wrong with her and can treat it successfully.

lashea727
by on Mar. 13, 2013 at 5:13 PM
1 mom liked this
IM gald that's everything ok I hope for good wishes, prayers. I have blood thinners now for the rest of my life. I take meds to check my ptr every month. I hope everything goes well for your daughter.
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lashea727
by on Mar. 19, 2013 at 8:31 PM
Hi, how is your daughter feeling today. Is she still going to get her blood check. I been on blood thinners for 9 years now. I half to watch out for cutting, hurting my self. IM walking, eating less and drinking alots of water everyday.
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Tameez
by on Mar. 19, 2013 at 9:03 PM

Actually she has a really bad cold accompanied by being nauseous. They took her off the naproxin for pain (she was on those while she had clots and they were painful).  She is only taking the 81mg of Asperin every 4 hours and 2 at bedtime as for blood thinners.  They are repeating the MTHFR (I think that's the initials), it came back at negative the first time but they are going to do another more extensive test to make sure they get another negative.   I am not exactly sure that I understand this test yet... all I know is a double negative is good.    Her legs are feeling pretty good right now.  We were told they clots are superficial and superficial clots do not travel up, so that's good.  I guess she will always be suseptable to deep vein which do travel. She did get compression socks for our drives to DE to visit her brother.  She goes back in May for more bloodwork.  

So what I got out of all of this is that yes, she has Factor V BUT it's not bad at this point.  Due to her loss of a baby, preeclampsia at 21 weeks gestation, Catherine Sage...  She can't take any estrogen, and if she would decide to have a baby she will have to be monitored extremely closely but the dr. said to not let Factor V make the choice for her of not having another baby.  

I am going to be tested next time I go to the dr.  Only 1 of us (me or hubby) have it, they were able to determine that, so I will be tested because I have regular blood work done every 3 months. If  I don't have it then we know tom is the carrier.  

Thanks for checking in :)


Tammie

Quoting lashea727:

Hi, how is your daughter feeling today. Is she still going to get her blood check. I been on blood thinners for 9 years now. I half to watch out for cutting, hurting my self. IM walking, eating less and drinking alots of water everyday.


lashea727
by on Mar. 20, 2013 at 3:25 AM
That's very good that she is doing well, fine but also make sure that she take it everyday cause if she do miss a dose, then it's a chance she could get it back again. IM sorry about you or your husband might have it. I will pray and hope your guys don't have it. I have DVT and my mom has it too. My kids don't have it but they will get test again
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Tameez
by on Mar. 20, 2013 at 8:23 AM

Thank you.....   The odds are in my favor that I am carrier but either way it makes a big change in our medical history.  My mother kids may not ever get it and I hope they don't, I hope it's something that none of ancestors will have to go through.    She will stay on the med's until they say different.  She isn't dating anyone right now so birth control right now isn't an issue, but when it does happen she has to be very proactive and make sure that she knows what her options are until she wants to have a baby, if that day will happen again. 

Quoting lashea727:

That's very good that she is doing well, fine but also make sure that she take it everyday cause if she do miss a dose, then it's a chance she could get it back again. IM sorry about you or your husband might have it. I will pray and hope your guys don't have it. I have DVT and my mom has it too. My kids don't have it but they will get test again


lashea727
by on Mar. 20, 2013 at 8:36 AM
Well keep posted on her cause I have it and maybe we can talk about it. IM so sorry that she can't have kids. IM here for you and your family.


Quoting Tameez:

Thank you.....   The odds are in my favor that I am carrier but either way it makes a big change in our medical history.  My mother kids may not ever get it and I hope they don't, I hope it's something that none of ancestors will have to go through.    She will stay on the med's until they say different.  She isn't dating anyone right now so birth control right now isn't an issue, but when it does happen she has to be very proactive and make sure that she knows what her options are until she wants to have a baby, if that day will happen again. 

Quoting lashea727:

That's very good that she is doing well, fine but also make sure that she take it everyday cause if she do miss a dose, then it's a chance she could get it back again. IM sorry about you or your husband might have it. I will pray and hope your guys don't have it. I have DVT and my mom has it too. My kids don't have it but they will get test again



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Tameez
by on Mar. 20, 2013 at 8:47 AM

She was told that she can have children just that when the time comes she has to be monitored very closely.  I hope she meets someone special someday and she will have a child or 2.  She works in daycare, loves kids. She will be a great mom someday :)    We should definitely keep in touch.  If we aren't friends, I will friend request you.  


Hugs

Tammie

Quoting lashea727:

Well keep posted on her cause I have it and maybe we can talk about it. IM so sorry that she can't have kids. IM here for you and your family.


Quoting Tameez:

Thank you.....   The odds are in my favor that I am carrier but either way it makes a big change in our medical history.  My mother kids may not ever get it and I hope they don't, I hope it's something that none of ancestors will have to go through.    She will stay on the med's until they say different.  She isn't dating anyone right now so birth control right now isn't an issue, but when it does happen she has to be very proactive and make sure that she knows what her options are until she wants to have a baby, if that day will happen again. 

Quoting lashea727:

That's very good that she is doing well, fine but also make sure that she take it everyday cause if she do miss a dose, then it's a chance she could get it back again. IM sorry about you or your husband might have it. I will pray and hope your guys don't have it. I have DVT and my mom has it too. My kids don't have it but they will get test again




lashea727
by on Mar. 20, 2013 at 9:07 AM
1 mom liked this
IM very happy to get to know you better and stay talking
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