Antiphospholipid Syndrome

[meaniejean]

Well, guys, it looks like Cal has Antiphospholipid Syndrome. Just got his most recent tests back and he is still positive for the antibodies. We are waiting for our rheumatology appointment now so that we can figure out treatment and whether or not this is related to another underlying autoimmune issue such as RA, Lupus, etc.

So, we are on only low fructose now (instead of full restriction) and Cal is loving it. We'll see how it goes ...

Isn't he the second kid on here to have a rheumatological disorder that looked like HFI - I think I remember a little girl???

Hope all are well!
-Sandra

[charlie]

How on earth did they get to that diagnosis from his symptoms, I've never heard of that, Great you are getting some answers. mind you - try saying that diagnosis after a few glasses!!!!!!

[meaniejean]

Strangely, it was the allergist/immunologist we saw in Boston. She was awesome. She heard about his hand and foot pain along with the abdominal pain, GI bleeding, headaches and bizarre behaviors and became concerned about vasculitis. She did a vasculitis panel and antiphospholipid antibodies and ...

He had one elevated test back in March and another a couple of weeks ago.

It's also called Hughes Syndrome - that is probably what it is referred to as in GB. It is a sort of cousin to Lupus.

We are feeling a bit nervous and a bit relieved ...

-S

[charlie]

Thats more like it, found it more under Hughes, hmm, looks as though a few symptoms not good but hopefully now recognised and treated then they won't happen. Found this british association for it if any help www.hughes-syndrome.org/

[meaniejean]

We had our rheumatologist appointment. He is treating Calvin for Familial Mediterranean Fever. He did some tests for autoimmune diseases such as lupus and scleroderma, etc., but he thinks it sounds more like FMF.

So, he has been on colchicine for almost two weeks and he is eating plenty of fruit and veggies with no symptoms. I don't know how this is possible!!! He has lots of energy, no tummy problems, no joint problems, no sleep problems, no nothing! It's amazing! I am keeping my fingers crossed that he isn't just in a good spell and we're heading for a breakdown or hospitalization.

The only thing I can think of is that fructose causes our bodies to produce too much uric acid - and FMF is suspected to be related to purine/uric acid disorders ... so???

Sawyer is still mostly fructose-free - except for some tomato sauce. He pretty much rejects anything else.

Anyway, just thought I would post this in case it could help someone else down the line.

-Sandra

[meaniejean]

Had a small flare today, but nothing compared to how it used to be. Hopefully we are on to something here!