What are symptoms of Antiphospholipid Syndrome?

[Rachel]

I have read some articles about this syndrome but I am not getting a clear picture of what the symptoms actually are? What symptoms does you child have from this syndrome? My son has not been checked for this but the more I read, I am wondering if this could be part of his problem. Is there treatment for this?

[PowPow]

My child has no "typical" symptoms from this disorder. No clots, no obvious coagulation or vascular issues. However, as i am sure you are reading, there are many neurologic, cognitive and psychiatric symptoms associated with it. She had those!

 

She has moderate-high anti-cardiolipin antibodies (a few months apart- the criteria for diagnosis)

In females, it is definitively associated with miscarriage, placental problems and stillbirth.

 

I also have this syndrome and during pregnancy, I take a baby aspirin daily and lovenox injections daily. I switch to twice daily heparin the last few weeks of pregnancy. When I am not expecting, I am "treated" preemptively, I suppose, with 325 mg aspirin daily.

 

I did have significant pain associated with a very frequent "pins and needles" sensation in my fingers, feet and elsewhere- for a few years. As I was diagnosed with the syndrome and treated- those symptoms have remitted. I never was able to notice blanching of the area (due to decreased perfusion) but the hematologist I saw felt that was the cause of my pins & needles feelings. He said that some patients are able to notice the blanching and sensation concurrently, for example, in their fingertips.

 

My daughter has been treated with cellcept, plaquenil, baby aspirin, monthly IVIG and high dose steroids and then Rituximab in April. She is being treated more for autoimmunity than coagulation, specifically.

 

At first, I thought I understood the APS as causing a blood flow issue that allowed the BBB to be a bit more permeable and that allowed the encephalopathy. I am not sure the mechanism is understood.

 

Even in the fertility aspect, there seems to be disagreement as to whether the problem stems directly from a clot (caused by the "sticky blood") or if it is more of an autoimmune reaction to the antibodies that creates the hostile environment for a pregnancy. I think that also may depend on the timing of the loss.

 

My daughter is doing great. This treatment has been in effect for almost exactly one year! (Aug 4, 2013 was her first of the monthly IVIG/solumedrol infusions). Her sed rate is now normal, for the first time, since it has been checked since her illness began ( in Aug 2008)!

[Rachel]

Thanks so much for this information. I am going to see if our doctor will check for this in my son. I am beginning to understand where the autoimmunity part comes in. I was able to read a section for the book online entitled Inflammatory and Autoimmune Disorders of the Nervous System in Children. On page 125 in the last paragraph it states that " Strep induces vasculities of the medium-size vessles leading to neuronal dysfunction. Vascular lesions could be produced by antiphosolipid antibodies." Did your daughter by any chance have strep infections?

 

I'm so glad to hear that your daughter is doing so well. Is she going to continue doing the treatments for awhile longer or does she get a break? I was just wondering how long she would need to continue with the treatments. Five years is a long haul for any chronic illness.

 

You can only view certain parts of the book but Chapters 8 and 9 have some really good information on Sydenham Chorea and PANDAS. Here is the link.

 

http://books.google.com/books?id=jwlt4t3GKj4C&pg=PA125&lpg=PA125&dq=antineuronal+antibodies+found+in+rheumatic+chorea&source=bl&ots=N9mTNgW_gX&sig=uBRs3U7HRBXJgwfJbEjCZ0sZAT4&hl=en&sa=X&ei=Np3OU7qNLqOd8QHJpoCwBw&ved=0CB8Q6AEwATgK#v=onepage&q=antineuronal%20antibodies%20found%20in%20rheumatic%20chorea&f=false