Success after IF

If you/a family member has a bleeding/clotting disorder, pls come in

We got Cal's blood tests back today.

History:  petechia (bleeding/broken capillaries under skin) off & on for 9 weeks now.  CBC at onset was normal except for elevated PTT (clotting time).  At first deemed viral but after they continued we were referred to a hematologist.

Saw hematologist last week, who ordered repeat PTT/Factor Tests (I think there were 4 or 5, I don't know which ones specifically).

Factor VIII came back low at 36%.  Factor XII was also low at 43%.

Dr. said the XII reading has no clinical significance, but she wants to test further because of the low VIII.

She wants to do further testing for Factor VIII, Von Willebrand (for some reason I thought that's what the initial Factor tests were for), and platelet function.  She actually didn't mention the platelet function testing to me over the phone, but the nurse who emailed me (I requested this in writing so I could retain it better), referenced a platelet function test.  Which has me confused b/c when we saw hthe dr. last week she told me we might want do platelet function testing a couple of years down the road if symptoms continued/got worse, but right now we wouldn't b/c he's too young (they have to take a lot of blood).

She's thinking it's a mild bleeding/clotting disorder, just need to get to the bottom of it.  Could be Von Willebrand, could be Hemophilia A (likely a mild form).  I need to ask her to clarify about the platelet function testing.

We will be getting a call to schedule testing at the "coag lab."  She assured me they would only take as much blood as was safe (well duh - I would hope so!). 

Said it would take 3-4 weeks for results and they may ask us to come in for more blood if they don't have enough to begin with.  Also said they'd be repeating the Factor tests just in case the results were off due to lab error.

I'm not overly concerned, but she wasn't quite as blase about it as she was last week where she basically said it was no big deal and we'd monitor him for the next couple of years. Then again, she said herself at the time that she was expecting last week's testing to be normal, so that's why we didn't really discuss the next step.

Just curious what others have been through.  This is all new to me and frankly blood testing - all these Factors and such - is pretty complicated and confusing to me.  Thanks.

ETA:  Factor tests have to do with blood clotting:
The body's 12 clotting factors are numbered using the Roman numerals I through XII. They work together in a specialized sequence, almost like pieces of a puzzle. When the last piece is in place, the clot develops ? but if even one piece is missing or defective, the puzzle can't come together.

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Re: If you/a family member has a bleeding/clotting disorder, pls come in

  • Just wanted to let you know that I'm keeping him in my thoughts!  I hope that you are able to get to the bottom of this soon!
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  • I'm also keeping the lil guy in my T&P. I can't imagine how confusing this is, but I hope everything is okay with him.
  • whoa. I've never even heard of any of these conditions. I hope you guys are seeing someone reputable and that you get concrete answers very soon. this can't be easy. I'm sorry. :(
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  • imageroaringrock:
    whoa. I've never even heard of any of these conditions. I hope you guys are seeing someone reputable and that you get concrete answers very soon. this can't be easy. I'm sorry. :(

    Thanks.  I believe we are.  All the conditions I mentioned are bleeding/clotting disorders...mild ones.

    Childhood cancer (DH) + chemo + radiation = 0 sperm.
    LO #1 - 1 unmedicated/self-monitored IUI w/ donor sperm.
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  • I'll keep in my thoughts. 
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  • I don't know anything about clotting disorders, but I hope the further testing shows there is little/nothing to be concerned about with Cal.  Please keep us posted and until then, you guys will be in my thoughts.

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  • I wish I could help, but I don't know anything about any of these.  Keeping you guys in my thoughts - I imagine this is all super overwhelming.
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  • When I was tested, they had to take 19 vials of blood to test for 12 different clotting disorders. Don't be surprised if you have to go back for a second draw. Some of the tests require more than one vial. I'm not much help other than that as I have mthfr and it was found in the initial testing. I hope all testing is quick and you have an answer soon!
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  • My husband has Von Willebrand's.  Whne the boys were in the NICU they told us the can't really test for it until around age 2. Not sure why. I plan on asking about at their 2 year appointmetn in a few months... It doesnt really have a huge impact on my DH's life but I do hope they boys don't have it. Let me know if you have any specific questions.
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  • imageLisaandBryan:
    My husband has Von Willebrand's.  Whne the boys were in the NICU they told us the can't really test for it until around age 2. Not sure why. .

    I bet it has to do with the amount of blood necessary to do the testing.  How did your husband find out about his, and how was it diagnosed?

    Childhood cancer (DH) + chemo + radiation = 0 sperm.
    LO #1 - 1 unmedicated/self-monitored IUI w/ donor sperm.
    LO #2 - 1 m/c, 2 BFNs, 4th IUI worked (unmedicated/self-monitored with new donor sperm).
    Life is beautiful!

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  • imageSeaSoul:

    imageLisaandBryan:
    My husband has Von Willebrand's.  Whne the boys were in the NICU they told us the can't really test for it until around age 2. Not sure why. .

    I bet it has to do with the amount of blood necessary to do the testing.  How did your husband find out about his, and how was it diagnosed?

    It is genetic.  Both his mother and his brother have it but interestingly enough neither of his brother's kids have it.  I hope Cal doens't have it either but its not hat big of a deal. My husband has medicene that he keeps in the fridge at home and he has to take it if having something like dental work done which will involve bleeding and that can be a pain but it doesnt really have a big impact on his life.

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  • No expertise, but hoping you get more answers and it's nothing serious. I'm glad it doesn't sound like anything super concerning thus far.
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  • As far as Hemophilia A - i have a good friend with this. He has a pretty mild form of it but he also has to pre med before surgery or dental work. He bruises easier as well. He says it really has never caused any problems in his life but he does carry card he had made up in his wallet stating he has this and his emergency information has a just in case. About 5 years ago he needed his appendix out and he had to wait 12 hours for the surgery (he went through the ER) because he had to pre med. It wasn't life threatening at that point so they said it was ok to wait.
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