Sticky Blood-Hughes Syndrome Support
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Our son, Grant ( age 15) has been diagnosed with APS - "let's talk about the new experimental Antibodies"

1. Got the results yesterday. Aspirin for now should be fine. His " traditional three antibodies "are border line but negative. ( unlike me.)

2. The new ones- "experimental" "stylerine" panels were positive on two. ( I was only pos for one, once. Then neg. but I reclotted when back to sero neg for traditionals.)

3. The family history ( my mom plus me ) makes his pedi hematologist confirm his diagnosis.)

4. Will you allow Grant to join this Forum under Grant in Texas as a 15 ( almost 16) year old? He may have his own questions? ( he is not an adult yet- so I'm not sure your rules. He knows quite a bit because he's keeping up with me.)

5. I'm quite overwhelmed. I was confirmed with POTS earlier this week. He is showing symptoms. He's having migraines. He started with ulcerative colitis ( bleeds) at age 6, and unusual levels of one of the b vitamins in grade 2, so abdominal lymphoma was suspected. We were sent to a pedi hematologist then- it was ruled out. That's how we happen to already be in the care of a pedi hematologist.

I'm seeing his family doc today. Obtains a referral to a pedi Rheum. Spoke with tennis coach yesterday. ( lots of extra fluids in Texas sun.) meeting with school nurse and Rector ( Princital/ Head master today also. My internist tomorrow. Starting cardiology for me. Not sure how to manage all this. Calling in for a new employee to train to help with the load at company. INSANE.

6. Do males suffer actual Lupus also? Is it strictly female? ( I should really know the answer to this. I apologize. ) You are the experts. Please, as we say in old Texas cowboy culture, I need my Posse! You guys are it!

5 Replies

Hi Kelly

First and foremost Im sorry you have had this news and extra stress. I will answer your questions as best I can in the order in which they are asked.

Q2. I was not aware that there were new antibodies that were commercially available. Can you give me more information and tell me how your Dr became aware of them please?

Q4. The age limit is not our rule but HealthUnlocked. You will have to continue to ask on his behalf until he is 16.

Q5. Has he been tested for Celiac Disease? If not I would get him tested. Once he has been if negative, then I would get him on a GF diet. Thats not to say just a now and then when I fancy it one, it is total exclusion of Gluten. I would also by doing a exclusion diet, check on soy and lactose for starters. The other thing is Sjogrens Syndrome. many people think that is just dry eyes and mouth but there are abdominal symptoms that can create problems, so also get him tested but understand that many people also test negative when they are not!!

Yes men can get Lupus, 90% are women but are you talking Hughes or Lupus? Men of course can get Hughes. I understand that this all seems overwhelming especially as you too are coming to terms with your diagnosis, but things will settle down. Its much better to know and learn about the condition, be mindful and respectful with the symptoms and understand what is and isn't something to worry about. No two people with this condition are exactly the same. You both will settle down, and with luck as he is young, he will lead a normal life. Research is better now than its ever been so he must be positive and not get depressed about this.

You know I will always be happy to answer your questions if I can and yes we are your posse!!

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Excuse me jumping on the excellent Lynn question answering skills here, but I have limited access to the net, I am up in the mountains of Spain and only get the odd minute here and there which works. This answer is excellent, it is often the case of joining a large jigsaw together. It was with my children and also myself. Best wishes. MaryF


So sorry about your son.

I believe I was diagnosed as having APS antibodies on one of these antibodies Phosphatidylserine AB - IgG

My APS specialist refers to these as "secondary antibodies," and that is what I have read them referred to elsewhere.

One center for APS in the US said a few years ago something to the effect of "we know these exist but we won't test for them because we don't know what they do." Recently, I have seen more some more inclusion of these.

Judging by my tests there are a lot of them, and they are commercially available, but I think the panels are done by specialty labs.

I have seen at least one article by Dr. Khamsata who mentions "secondary antibodies."

Here is one recent article that at least mentions "secondary antibodies."

I haven't been able to find a whole lot of information on this, but what I have gleaned about the antibody I was positive for is that it is known to increase the risk of stroke but may also attack the nerves themselves.

I'm 64 and haven't had a clot or stroke, but have a lot of the neuro symptoms that are listed as being Hughes related. On the other hand, I have low titers, but still positive with symptoms, and anticoagulants have helped. My doctor suspects I have had "micro" clots.

I suspect more research will be done on these antibodies in the future.

In one respect, I think your son is lucky that he is diagnosed at an early age and if he develops more symptoms, he will know what is happening;

Sorry, I can't be more specific. I'm not sure if we are talking about the same thing, and as I said there has only so much I've been able to find out myself through my Google searches.

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So sorry to hear this Kelly, it seems the hits just keep coming at you, I hope your son is not traumatized, esp after watching what you have been going through. I do not know what to say? If you need me you know how you can reach me, I am only a phone call away? I have said a prayer for you both. Try to keep your chin up, I understand it's not easy. I will continue to think of you and him💕


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