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

[KellyInTexas]

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!

[AnnNY]

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."

emedicine.medscape.com/arti...

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.

[Wittycjt in reply to AnnNY]

Enjoyed this article

[MaryF Administrator]

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

[Wittycjt]

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💕