PLEASE HELP ME....

Wow, this site does not have many people that reply to your topic's, unless no one can relate to mine. I'm just in need of some insite to what other's have expieranced or if they expieranced any of my symptoms!

Hi Pixie, I have to admit I have never heard of this before. I was thinking back about my son when he was your boys age. I was in the kitchen and he came down the hall to the kitchen and what was weird was that he was using his arms and hands to pull himself down the hall. He couldn't walk. It was like he was paralyzed from the waste down. It only happened a couple of times I had to pick him up and put him in bed. The doctor told me it was just growing pains. all though I don't really recall him crying from the pain or anything.  As far as being able to tell you what it means I'm willing to bet that even the doctor doesn't know. These immune problems are so frustrating. Either they are just to hard to figure  out or there hasn't been anyone that has/had it to make them put up the money for testing. Do they have him on any kinds of medicines now? There are many meds that will help with difference symptoms but not nessesarly going to answer the question about what it is. There are a couple of ladies that have children on here that could probably relate to your son's case but they aren't around much. Try not to worry to much if at all possible. That's not going to help anyone. It sounds like you are doing everything you can. I really hate it when you have to be on all the waiting lists. Maybe you could get another rheumy in the mean time and tell them you want to do a second opinion. Write down everything that you notice that your son does that is out of the normal for him. Start a journal. take his temp 3 times a day. write it down weather he has one or not. get a camera take pics of every rash bump or bruise that he gets. take pics or swollen legs an ankles. what happens if you don't is they won't be there when you are at the doctors and what we my think is normal may be a red flag for the doctor. Also and this is very important. Call up the doctor and asks specifically if this doctor is knowledgable of auto  immune diseases. Many of them aren't. they are RA doctors but not lupie doctors. that makes a big difference.

You might try getting some ice to put on his knees and other joints to bring the swelling down.  lastly if you don't get the answers you are looking for run do not walk to the next rheumy. No sense wasting each others time. Trust me it happens more then you know. Having a good doctor to relate to you are your son have to be comfrtable with them.

I'm sure others willl be here with info as well. I don't know about the others but this gloomy weather is kind of makingmy body drag.

I hope you and your son will find some answers soon.

hugs

carol

My cousin was hit with dermomytosis... she was very sick... right now doing ok... but I think it affected her muscles....

here is some info i collected on antiphospholipid syndrome........i've been collecting any & all things related to SLE......i am so sorry to hear about ur son.......i had 4 kids & when they r sick, it nearly kills u........if this was my child, i'd pester & call & demand that any dr who knows anything about this & talk to u.........u may have to talk to many drs to get the help u need.......u know the thing about the squeaky wheel....it applies.........anyway, here's the info i have: i have alot more info on this, but it's really long........if u'd like me to mail it to u, email me at: [email protected]......

Antiphospholipid syndrome
From Wikipedia, the free encyclopediaantiphospholipid

Antiphospholipid syndrome (APS or APLS) or antiphospholipid antibody syndrome is a disorder of coagulation that causes blood clots (thrombosis) in both arteries and veins as well as pregnancy-related complications such as miscarriage, stillbirth, preterm delivery, or severe preeclampsia. The syndrome occurs due to the autoimmune production of antibodies against phospholipid (aPL), a cell membrane substance. In particular, the disease is characterised by antibodies against cardiolipin (anti-cardiolipin antibodies) and β2 glycoprotein I.
The term "primary antiphospholipid syndrome" is used when APS occurs in the absence of any other related disease. APS is commonly seen in conjunction with other autoimmune diseases; the term "secondary antiphospholipid syndrome" is used when APS coexists with other diseases such as systemic lupus erythematosus (SLE). In rare cases, APS leads to rapid organ failure due to generalised thrombosis and a high risk of death; this is termed "catastrophic antiphospholipid syndrome" (CAPS).
Antiphospholipid syndrome is sometimes referred to as Hughes syndrome after the rheumatologist Dr. Graham R.V. Hughes (St. Thomas' Hospital, London, UK) who worked at the Louise Coote Lupus Unit at St Thomas' Hospital in London.