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Sticky Blood-Hughes Syndrome Support
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My 6 yr old daughter tested

Just to be proactive my children's pediatrician agreed to test the kids. So we have tested my 14 yr old son and my 6 yr old daughter. My son's tests came back good. My daughter on the other hand tested high for B2 Glycoprotein IgA. The range is 0-20 and she tested at 21. Her platelets are at 445,000 and her in the states the range is 150,000 to 400,000. The results also says she needs further testing for LLI plus cardiolipin and Beta 2 Glycoprotein 1 antibodies. It will be a few weeks to a few months before we see a children's Rheumy. I am not going to jump to conclusions, panic, or predict. I just always wondered if my mom would have known could the last 15 yrs have been a little easier for us. If my daughter could have it i want to make sure she has the best care, someone to fight it with her.

What is everyone's thought on having your children tested and being proactive. Honestly i would rather keep an eye out instead of waiting until a DVT, heart attack, Stroke, miscarriage, stillbirth or other symptoms and complication to happen. Please tell me your thoughts and if you have any info regarding this please please let me know.

Thank you in advance for you comments

19 Replies

well done ii say for being brave enough to get them tested. My gp wouldnt test my daughter til shes in her fertile years,but when i look at her mottled skin and listen to her complaints about eye blurring and joint pains i cant even think about how il feel if she has this,im just wracked with guilt, i am going to speak to my consultant and get it done,and im starting a life manual for her in case im god forbid not here,that includes getting high dose folic acid before pg and treated during. hope your ok x


I was a sickly child and things got worse when I started my periods at the age of 11. I wasn't diagnosed until I was in my 30s and had been ill on and off pretty much all my life! By the time I was diagnosed I was spending three days a week in bed, running my business from the bedroom. I would have wanted to know what was wrong with me as a child and why I was different from the others.


When my husband was diagnosed the Medical Specialist and our GP both told us to get my daughter tested. She was 15 at the time. We got the blood taken for the tests, but then got notified by the testing Lab that they didn't do screening for it, they waited until she either had a DVT, PE, or worse, or started having miscarriages before they would actually test.

I couldn't believe it. I have known women who have ended up with all sorts of problems because they went on the Pill without knowing.

We have warned her (she is now 18) that, if ever she goes on the pill she is going to have to be very careful. She has never been a bleeder, unlike her brother who bleeds at the touch of a pin.

I don't know how to get her tested in NZ, but if I could, I would definitely get her tested.


Will you have the same reaction from all Labs? I would seriously find a private one who would do the tests I cant believe that there will not be one that wont do it. Either that or she may have to go to OZ.


Unfortunately they don't have private labs in NZ for these types of tests. I am thinking she may have to head to OZ at some time, but health care over there, for NZ'rs is actually expensive.

I am looking into getting the bloods drawn here, and sent to OZ for testing, but I have to find out how to do it.


if you feel your child could be at risk then I feel they should be tested. I have something called Hypoparathyroidism my consultant told me it was not hereditary, I found out it could be so I had my children tested.....my son had the same as I.

It is not being over protective it makes sense.......take care. Jillymo x


I think that it is so wonderful that you have managed to have your children tested, at least you are ease with the knowledge that your child will benifit from adequate care if she is positive (hopefully her results suggest otherwise). I have two daughters whom I would love to have tested, I have expressed this to my GP but he does not really seem keen on the idea as my children have not shown any signs of illness. I had a simular experience to the lady whom said she was a sickly child, I suffered from severe headaches and Lathergy, I was disgnosed with APS at the age of 19 after having a mini stroke as a result of taking the contrceptive pill.

Good luck with your daughters results, it is far better to be aware of a condition than to wait for something to happen.


I'd say grab the bull by the horn and do what needs to be done. My daughter in high school was sick, run down and stayed home. We didn't know it at the time, but she had polycythemia... shortness of breath, weak, fatigue... So she missed PE class and the teacher would make her run 3 miles for make up. She was too ill to do that so we had to conference with her teacher and compromise. With polycythemia your blood is too thick (HCT) and less oxygen being carried, swollen spleen, swollen liver all kinds of issues to deal with.

I sometimes wonder if polycythemia is a far and distant cousin to APS.

Based upon your experiences and knowledge you know when to request certain tests that should be done.



I have spent a lifetime of being unwell, having tests done and then being told that they were all "fine"...FINE......FINE!!! What did that mean? I didnt feel fine and when that goes on happening time after time and you watch the Doctors eyes glaze over you get to the point where you dont even want to go to the Doctors to tell them when you are ill.

The problem is, are they testing for the right thing? Are they humouring you by just doing run of the mill tests instead of really listening to you and then working out what they SHOULD be testing?

From my point of view I would have LOVED to have known 40 years ago what my issues where down to instead of the guessing game Ive been put through, unnecessary tests, countless hospital visits and examinations, misdiagnosis and then finally having to unnecessarily suffer the scary PE and Stroke with the now permanent affects.

So yes, get your daughter tested, you dont have to tell her until she is old enough to understand, but it is an illness the same as any other so I never understand Doctors who expect us to adopt the ostrich syndrome when you could be potentially saving your child's life.


I too spent my life sick -- rundown, tired, pain in the everything. Sore joints, night cramps. Then I hit mearche and it all got even worse. Now I fainted at school with depressing regularity. You know feinting is inconvenient at best and dangerous at worse. One must gaurd against being on a staircase or standing in s school cafeteria line -- or behind the wheel of a car! -- when one is likely to feint. Therefore I had to learn how to moniter my internal dials and meters with great care. Which meant that all save for my closest friends who had seen me go down several times, dismissed me as a "nut case" who was hypochondriacally obsessed with her own health.

My parents divorce was as complicated as divorces usually are, but one prominent factor was that some misc. Army psychiatrist told my Mom during WW2 that Father was seriously insane due to his mental ability to mimic appendacitis and an enlarged spleen whenever he received his pre-deployment innoculations. These brilliantly "faked" symtoms earned him a trip to the hospital instead of being sent abroad to fight. This doc "knew" Father was unconsciously, but brilliantly "faking it" because there was never any infection though the inflammation was real. Turns out, Father had lupus and in this country lupus was not formally recognized as a legitimate, non-crazy disease until 1952. And by then Mom had made up her mind.

So, all of my pediatricians have passed now. But I wonder -- did my treating docs, who knew all about my family's divorce know about my APLS? (which at that time would have been called -- " blood condition related to lupus.") Or not. I have since found that one of my pediatriians knew I had Celiac at age 4 but Mother decided that it was impossible to be allergic to bread. Mom took this doctor off of her mental list of doctors who were consulted to treat me because she knew he was in cahoots with Father to make Mom's life miserable.

I wondered why I was never taken to see Dr. Cxxxx anymore. I liked him, he lived only a block from our house, but I was told he was "on Father's side" and therefore his medical opinion was not to be trusted. Once when I fell playing on mine equipment and ran a bunch of metal spliters into my forearm and therefore needed treatment and stitches we found most of the docs who would treat me for free were on vacation. I offered that Dr. C was at home because I had seen him that day. Mom responded by telling me that "Dr. C. wants you to never eat a cream horn from Nu Era Bakery ever again" (this was my favorite yummy.)

That answer puzzled me for years. Now I know why.

So -- of course you are doing the right thing. I am probably the most glaring example of a kid whose parent who did completeley the opposite!

Remember that many people are positive with blood tests but remain asymptomatic. Perhaps if you and your kids know about the possibility of developing the disease you can avoid triggers --- such as HRT and exposure to excessive amounts of chemicals.


I had my 16 year old son tested. He doesn't have any of the antiphospholipid stuff. I know the doctor wanted spencer tested when he was in his mid teens. The doctor felt that in the early years that the test results may be wrong.


I have two sons aged 9, 11. I had them both tested two years ago when my brother and I were both dx with APS. My younger son tested totally neg which was not a surprise as he has never had any symptoms. My older son had a prolonged PT(one of the clotting tests that are often prolonged in APS)--identical to mine and my brother. His antibodies were neg but so were mine until I became very sick w autonomic trouble and even then they were just in the low positive range. He started on aspirin 81 mg daily then which markedly decreased his trouble with episodic headaches, dizziness, and lethargy. He still gets them occasionally. Even at age 9, a typical boy who plays a lot of sports, he would ask to take the aspirin daily--he knows how much it helps his symptoms. I recently got him retested again--same result--our insurance company is fine with periodically testing him. Dr Hughes says the kids often don't test positive until puberty at least.


Dr Hughes has also told me, "I have learned over the years the importance of getting on proper treatment for APS as soon as possible"


Question to all those that have kids that show symptoms. We were concerned with my daughter but she seems fine at the moment. My Dr said he wasn't worried about my son because he keeps having nose bleeds (for no reason). However, he gets headaches regularly, constantly complains of aches and pains, is alwasy fatigued, gets dizzy regularly, all for no apparent reason.

He is 16 and has ADHD so he is on meds which has helped some, but I am wondering, do any of the children/teens testing positive get blood noses just randomly?

Listening to the symptoms, I am now wondering if perhaps we were trying to get the wrong child tested.


I would get him tested--nothing to lose there. The testing is fairly inexpensive. My brother who also has APS had a huge thrombotic stroke at age 44. When he went on warfarin, he had a lot of nose bleeds even when his INR was not that elevated. He just takes low dose aspirin now for that reason even though he is triple positive--ie all 3 blood tests positive, so high risk for recurrent event.


Hi Salty - Curious to know why your brother would only be on low dose Aspirin now after a huge thrombotic stroke at a young age and is triple positive so as you say is high risk for a recurrent event? Understand about nose bleeds but Prof Hughes says they can be an issue but controlled but surely a balance of a better anticoagulant like Heparin could have been found for him? Over here after such an event it would have been warfarin or heparin for life.


Yes, I think most physicians would recommend lifelong anticoagulation, but people have to make their own decisions. My brother is intelligent and highly educated, has reviewed all of the literature and has still chosen to use aspirin (after 6 months on warfarin). So far, he has been right--he has had no trouble 2.5 years out.


I wish him well. x


Hi, I have the same dilemma. My son is 17 now and is a solo glider pilot. He may want to follow a flying career. Do I get him tested and run the risk of ruining his future? There is also the question of life insurance for him later in life. The trouble is I can't get a straight answer as to whether APS is hereditary. All the research seems to be centred around multiple miscarriages in women. I wouldn't want to advise you one way or the other, it has to be your choice as to what is best for your children. I am currently keeping a close eye on my son's health (who is remarkably healthy), especially with regard to headaches etc. I don't want to spoil his joy of flying and his life in general. Good luck.


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