Does anyone know of a case where someone was given larger than a 2g/kg over two days? (Like 4g/kg over two days) The information I've found only says that "overdose with IVIg is rare as it is almost always given by medical professionals." I can imagine that the side effects listed would of course possibly be much worse. Also the volume of fluid would be doubled. What I got during my first treatment was 174 grams @250/hr x 8 hours on day one and again on day two.No pre-meds. (supposed to get 70g's over 5 hours for two days.) This was a little over a year ago. Since then, I've gotten the correct dose with pre-meds. Problem: ended up in hosp. for 13 days with 104 temp and severe swelling, fluid in lungs and hyponatremia/hypokalemia and pancytopenia. (the doctor who made the error never showed up at the hospital to let the attendings know what had happened and what my diagnosis was.) Although I tried to tell them I had been diagnosed with SCLS and had Mayo records with me, now that I'm reading the medical records from that stay - they did not take me seriously till about day 10 where one doctor writes "she may have Clarkson's after all." Problem now: I want to pursue a med-malpractice claim. Can't find a lawyer who will touch the case because SCLS is "so rare". I've been told "we'll never find a doctor who can testify that the dose of IVIg caused the hospitalization". (much less cause any of the damage) I know that the volume of fluid infused alone triggered the episode. The Ig caused the anemia, fever etc. Anyhow - I really need some data on IVIg "overdose". Any advice from anyone? It appears that the doctor is just not going to offer any explanations on my behalf without a subpoena. Thanks, Carole T.

I'm so sorry to hear about what you went through over a year ago with your first infusion of IVIG! Your case is so unusual, because IVIG has been around for decades, so it is a medication that any competent doctor should know how to prescribe -- and every nurse and infusion center should know how to administer. Moreover, it is an exceedingly expensive medication, so the usual problems we SCLS patients encounter is (a) we don't get IVIG as quickly as we should after going through episodes that other medications do not prevent, and (b) we may get too little, and not too much, IVIG -- because doctors and insurance companies are understandably tempted to keep costs down. Even though there is no hard scientific evidence of how much IVIG patients with SCLS should get, or even whether they should get it, there are safe, recommended maximum dosing amounts set by the manufacturers of IVIG which should be respected no matter what illness you have. For Privigen, for example, which is what I get, check out their website _www.privigen.com_ and look under "dosing information." If you know which IVIG you got, you can find out this information. It sets a standard that doctors and nurses should observe. Moreover, there are precautions that must be taken, and so the fact that they didn't give you the recommended pre-meds may also have been a breach of proper medical procedure. Therefore, both the doctor and whoever actually administered the IVIG could be held responsible for what happened to you afterwards. SCLS is a very difficult condition to treat even when patients are properly diagnosed, and thus many of us have almost been killed, or have suffered permanent injury to limbs and/or organs, even in the honest and competent attempt of doctors to save our lives. (And in my view some of us *have been* allowed to die needlessly.) What to do about it is up to each one of us. In my case, I turned potential anger and depression into a constructive effort (largely by founding this RareShare site) to make sure others wouldn't have to go through what I went through. In particular, I wanted to avoid what the first 4 SCLS patients I ever knew went through -- namely, their untimely death. Whatever you decide to do, don't forget to count your blessings every day: (1) you are alive; (2) it doesn't sound like you suffered permanent damage; and (3) you are getting IVIG and it is working for you. (By the way, in order to get anywhere with a medical malpractice suit, I believe you need to prove that you suffered some kind of permanent financial or physical damage, which is then assessed for the purpose of seeking potential compensation.)

Thanks for reading that monologue Arturo. I have been hesitant to discuss the matter. I hate to admit how angry I am about it. I put off looking at the medical records I gradually gathered to investigate how it happened. As it turns out - the doctor who ordered it, who spoke with Dr. Greipp directly, wrote the dose wrong in four of the five times he transcribed his notes in his office chart. The Nurse at the infusion center knew the correct dose. I gave her my actual prescription written by Dr. Greipp and she said it matched the order she had. However - she said pharmacy had sent the two days dose up for the first day. I think that they were trying to keep from having to waste the dose that had been prepped. The nurse called the doctors office to check the order and someone looked in my chart in his office and read the dose as it was written incorrectly. At the end of the first day, the nurse told me I had gotten the whole dose and I wouldn't need to come back for day two. But she called the next morning and said the'd heard back from the doctors office and that I indeed needed another dose. (Another 2 days worth - 10 more hours of fluid at 250 an hour. I refused the last bottle. My lungs were wet.) It took months to finally start seeing a good bit of fluid coming off and I would get IV Lasix during subsequent infusions. Whatever happened, as a Registered Nurse who is appalled at what goes on behind the scenes at so many hospitals, I had already quit "hands on" nursing to work consulting on med-mal cases. And the hell I went through here locally as a patient had me convinced, well before the diagnosis of SCLS was made, that I was going to die at the hands of the quacks here that are getting away - literally - with... Anyway - the damage I sustained from the horrific "leak" that was induced are the typical - worsening of my eyesight and hearing and short term memory, slightly enlarged heart and a permanent botched left ankle. (and some more blue toes). But - I am not kidding - this IS karma. I knew better than to complain. I knew it! Get this - I just this minute got a call from the hospital where I get my IVIg now, today was to be my second day dose, they - are - out - of IVIG. Don't know when they'll get anymore. I know to count my blessings and it's how I get through everyday. And I know not to complain - but I did. I worried the minute I pressed that "send" button on that post. Karma., karma. Sure wish I had that "extra" dose now! Ha! I am sooo conflicted about this whole thing. I think I should maybe go with the other idea I had as opposed to a lawsuit - try to get myself booked on the "Dr. Phil Show". (kidding...sort of.) Also - I will e-mail you so that you can send me an example of the letters you're collecting for insurance purposes. (I don't see my doctor very often - but with this new turn of events, IVIg shortage, it may be sooner than I expected.) Thank you Arturo! Your fan forever, Carole Thorn