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Just found out my dd10 has positive factor 5 mutation. I think this may be one that comes in one and/or two copies but I don't know the specifics of her result. Her neurologist wants us to see a hemotologist soon.

 

If anyone has experience with this, can you let me know your experience and what you have done as far as doctor's visits, lifestyle changes, etc? I don't know what might be necessary at age 10 with no signs of blood clots as opposed to later in life.

 

She also has homozygous a1298c MTHFR gene mutation. We are currently waiting for her 23andme results. I don't want to go over board stressing about possible issues this fines and only focus on the big ticket items that will help her get well at this time.

 

Thanks!

 

 

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Thanks! I've seen it that way but it didn't compute I guess since I just said "five" in my head. LOL. I spoke to a friend who is a family doc and he said we should also be aware when she is starting her cycle as it could be a factor there but otherwise should not be concerned at this point but educated.

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Thanks! I've seen it that way but it didn't compute I guess since I just said "five" in my head. LOL. I spoke to a friend who is a family doc and he said we should also be aware when she is starting her cycle as it could be a factor there but otherwise should not be concerned at this point but educated.

I would agree with the family doc. I have taken care of many folks with Factor V Leiden Deficiency...makes them at higher risk for DVT's- clots in legs and Pulmonary Emboli- clots in lungs. I know they often put pregnant women with this gene mutation on Lovenox during pregnancy. I would think at age 10 it would just be an awareness to notify physicians along each stage of life so they would be alert and treat accordingly.

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Why would a family doc suspect this enough to test for it?

 

We tested for the MTHFR gene mutation for her because her sister was tested at her lyme specialist office since she was not getting well. She was positive so her sister was tested and she came back positive too. Her neurologist who tested her said she needed a homocystine levels and factor 5 (V) test as a follow up. Otherwise, we would not have known about this or had any reason to test. I don't think it's related to PANS except maybe it's often found with MTHFR mutations and I think we may find a lot of that on this board.

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Why would a family doc suspect this enough to test for it?

 

We tested for the MTHFR gene mutation for her because her sister was tested at her lyme specialist office since she was not getting well. She was positive so her sister was tested and she came back positive too. Her neurologist who tested her said she needed a homocystine levels and factor 5 (V) test as a follow up. Otherwise, we would not have known about this or had any reason to test. I don't think it's related to PANS except maybe it's often found with MTHFR mutations and I think we may find a lot of that on this board.

This has just become the big testing fad of the last 3 years or so. My experience is that somebody in the family has it and then they end up testing the entire family. Familial condition...not to discount it as a "fad." It IS important information to know...puts you at higher risks for clots. Not that you will necessarily get one but it is important information to relay so that clot is considered first in situations that call for it. Just like knowing you have family history of Diabetes... develop frequent thirst, frequent urination and weight loss...be good to have a sugar checked. Same with Factor V...develop shortness of breath, chest pain...look for PE. Develop leg pain...look for DVT.

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Suzan,

how were her homocysteine levels?

just curious. my daughters were high at some point. the doc who tested it was looking for it to be low, so when it came back high , they shrugged it off.

I have a cousin (second cousin, actually) who died of a blood clot after shoulder surgery - she had Factor V Leiden. I have been tested- negative, though I do have an autoimmune blood clotting issue- for which I take lovenox and aspirin during pregnancy, as you would with Factor V.

So it is great you found out-- even if just for any possible future grandbabies ^_^

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PowPow, her homocystine levels (and her sisters too) were normal. I am sorry for the loss of your cousin but glad you tested negative!

 

Everyone - thank you for your input on this! We see the hemotologist next week.

 

Susan

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