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Thread: Please help me......

  1. #1
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    Default Please help me......

    A couple of years ago my son was crawling on the floor when he woke up (he was 11, so that was unusual)
    I asked him what he was doing and he said I cant feel my legs. I took him to the emerg where he was admitted. He spent almost 2 week in the hospital on an IV taking steroid's. They did many test's. It came back for Myositis. Well in happend again a few months ago. He once again could not use his legs.
    We are now seeing a rhumatologist, neurologist and a metabologist. They did some blood work and they called me yesterday and said his Antiphospholipid Antibody was abnormal and they want it repeated in the middle of may. What does that mean? I do have a cousin with Lupus and I do speak to him alot about what my son feel's, these are some of my son's symptoms:

    He had myositis 2 time's to the point where he could not walk
    He get myositis in his calves alot but able to walk except those 2 times
    He has headaches almost every day
    He get's joint pain
    Bleeding noses

    When he does get the myositis in his calves it is usualy after he is sick with flu or a cold!
    He is going to get tests done on his heart to see if it damiging the muscle
    Anyone experiance this...? I am very worried as my cousin is not doing well and I am scared my son may have this, he is only 13!

  2. #2
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    How frightening! (((Hugs))) I'm so sorry your son is going through this. I don't really have anything to contribute but my prayers and this link with info...

    http://www.lupus.org/webmodules/weba...302&zoneid=526

    What are antiphospholipid antibodies?

    Antiphospholipid antibodies interfere with the normal function of blood vessels. They typically cause two kinds of problems:

    * narrowing and irregularity of the blood vessels (vasculopathy)
    * blood clots in the blood vessel (thrombosis).

    These antibodies react with proteins in the blood that are bound to phospholipid, a type of fat molecule that is part of the normal cell membrane. These blood vessel problems can then lead to complications such as stroke, heart attack, and miscarriage.

    There are several kinds of antiphospholipid antibodies. The two most commonly measured kinds are:

    * lupus anticoagulant
    * anticardiolipin antibody

    Lupus anticoagulant and anticardiolipin antibody are closely related, but are not the same antibody. This means that a person can have one and not the other. For example, in various studies, 8 percent to 65 percent of people with lupus have the lupus anticoagulant, and 25 percent to 61 percent have anticardiolipin antibody. These antibodies can also be found in people who do not have lupus.

    There are other antiphospholipid antibodies, but they are not routinely measured. These include:

    * anti-beta 2 glycoprotein 1
    * anti-prothrombin
    * the "false-positive" test for syphilis

    How common are antiphospholipid antibodies?

    Like other autoantibodies in systemic lupus, antiphospholipid antibodies can come and go in an individual. There are many ways to measure these antibodies, and different methods may not always give the same result.

    These antibodies were first discovered in people who have lupus, but it is not necessary to have lupus to have these antibodies. In fact, in most studies, more than 50 percent of people with these antibodies do not have lupus. We do not yet understand why a person's immune system begins to manufacture these antibodies.

    Why are antiphospholipid antibodies important?

    The presence of both the lupus anticoagulant and anticardiolipin antibody is increased in lupus patients who have had thrombotic (blood clotting) complications. In addition, studies suggest that the presence of these antibodies may also increase the future risk of such problems. These complications would be:

    * deep venous thrombosis (thrombophlebitis)
    * stroke
    * gangrene
    * heart attack

    The Antiphospholipid Antibody Syndrome or APLS

    Anticardiolipin antibody has been found to be increased in pregnant women with lupus who have had miscarriages. The combination of thrombotic problems, miscarriages, and a low platelet count has been called the Antiphospholipid Antibody Syndrome. It is not necessary to have lupus to have the Antiphospholipid Antibody Syndrome. It is important for doctors to realize this and to check people who have had a stroke, heart attack, or miscarriage for no known reason, to see if they have these antibodies.
    How do doctors test for antiphospholipid antibodies?

    Lupus Anticoagulant

    Specialized blood tests called coagulation tests measure blood clotting and are used to find the lupus anticoagulant. If the number of seconds that it takes the blood to clot is longer than usual, the physician will suspect that the lupus anticoagulant is present. This can be confusing, because even though the blood takes longer to clot in the test tube, the blood actually clots more easily in the person's body.

    The activated partial thromboplastin time (aPTT) is a widely available blood clotting test that is often used. If the aPTT is normal, more sensitive coagulation tests should be done, which include:

    * modified Russell viper venom time (RVVT)
    * platelet neutralization procedure (PNP)
    * kaolin clotting time (KCT)

    Anticardiolipin Antibody

    The lupus anticoagulant is classified as a type of antiphospholipid antibody that was first detected in people with lupus. It was later learned that many people who do not have lupus, also produce these antibodies. In fact, according to most studies, greater than 50% of the people who have antiphospolipid antibodies, DO NOT have lupus. So, just because a person has the lupus anticoagulant antibodies does not necessarily mean that they have or will develop systemic lupus.

    There is a syndrome called the "Primary" Antiphospholipid Syndrome (PAPS). This term is used to describe people who do not have any signs or symptoms of SLE but produce antiphospholipid antibodies such as the lupus anticoagulant and/or anti-cardiolipin antibodies and experience problems with blood clots, miscarriages, or thrombocytopenia (low platelets). People with PAPS do not have lupus.

    There are many classes of anticardiolipin antibody, abbreviated as IgG, IgM, and IgA. It is possible to test for all of these antibody classes at once, or the physician may wish to test for each one separately. The anticardiolipin antibody is measured in an ELISA test. The IgG type of anticardiolipin antibody is the type most often associated with complications.

    Sometimes, there are technical difficulties with the IgM test, which makes it more difficult to interpret the results. Some lupus patients with very high IgM anticardiolipin antibody have a problem called hemolytic anemia, in which their immune system attacks their red blood cells.

    Since antiphospholipid antibodies can come and go, how often should doctors check for them in people with lupus?

    There are no current recommendations on the timing of repeat tests. Certainly the antiphospholipid antibodies should be checked in people who have had thrombotic problems, miscarriages, or low platelet counts.

    What is the treatment for a person who has antiphospholipid antibodies?

    If a person has the lupus anticoagulant or anticardiolipin antibody, but has never had a thrombotic complication, treatment is not currently recommended. However, it is always a good idea to reduce other risk factors for clotting, such as being overweight or smoking.

    Some physicians may ask people with antiphospholipid antibodies to take a drug that blocks platelet action, such as low-dose aspirin or ticlopidine. Also, research studies suggest that the antimalarial drug called hydroxychloroquine (Plaquenil) may play a protective role against thrombosis.

    If a person has had a thrombotic complication and has these antibodies, treatment may depend on where the clot occurred. In general, treatment consists of "thinning" the blood to prevent future clots. This is usually done using warfarin (Coumadin), with aspirin sometimes added.

    How successful is treatment for people who have had a thrombosis (clot) in association with these antibodies?

    Some individuals who had initially been treated with aspirin have had a second episode of thrombosis and have then been treated with warfarin. A few of these people had a second episode of thrombosis while on warfarin; however, treatment with warfarin appears to be successful overall. The length of time that this treatment is necessary is unclear. Many physicians recommend long-term or even lifelong treatment to prevent future episodes of thrombosis.

  3. #3
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    Hi sweetie, and welcome to WHL.
    As a Mom, I really feel for you. We never stop worrying about our kids, and it is so hard to see them in pain. We're not docs, here, but I'm sure that Saysusie or Rob will be along with some wisdom and some research for you.
    I was checked out for spinocerebellar ataxia, which sort of reminds me of what your son is being tested for. I found out that there are all kinds of things that can be tested for. They even did genetic testing on me. For me, all of the ataxia tests came out negative, so we're back to Autoimmune issues.
    I know that you want answers NOW, especially when it comes to your child, but it seems that it can take years to get an accurate diagnosis when it comes to AI issues. All I can tell you is - research a lot, so that you can be his best advocate and if you keep getting non-answers, keep insisting that someone be found who can give you an answer. Get second, third, fourth opinions. Many of us have gone to big research hospitals, like The Mayo Clinic or Johns Hopkins. I went to Baylor Medical Center in Houston, since I lived in Texas at the time.
    Best of luck to you, and don't hesitate to come back here. We understand, and you can vent all you need to.
    Gentle Hugs,
    Marla

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    Hi,

    As another mom, i too can relate to your fears...I am so sorry that your young son is suffering. Abbasgirl did an exceptional job of explaining some difficult information, so I just came along to welcome you to our group. There are many of us who understand how a mom feels, and we will be here for you whenever you need us.
    Phyllis

    share a smile today

  5. #5
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    Big hug!!!!

    We as moms really feel for you in this situation, you are among some of the best people here for support and knowledge.

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