Erin- Send me your email. I would be happy to talk to you about it. My son is five. My email is sweetpeamoose9900@yahoo.com

Dear Erin: To my knowledge, the defining laboratory markers of an episode of SCLS are hemoconcentration (an increase in the hemoglobin and hematocrit ratios well above normal) and hypoalbuminemia (a decrease in albumin). [These are the medical terms the doctors should throw at you, that's why I use them. If they didn't, ask them whether these conditions were present during the episodes.] Changes in sodium levels or in the white cell count are not defining as to SCLS. The swelling episodes you describe also appear in other illnesses, not just in SCLS.

He does get hemoconcintration and he also does leak albumin. After doing what seems like millions of test and teams after teams off doctors looking at him the immunoligy team though this is what he had. the reason why I was second guessing the diagnoses is most of the people on here seem to have almost constant leaking. my son however doesnt he has swelled up on 3 occasions in 6 months all of which started with either a cough cold or on the third occasion he had the flu. which eventually led to the arrest.

Thanks for the clarification. Actually, no, most patients have episodes once in a while. Most patients who don't have any episodes now had either infrequent or frequent leaks, but they have their SCLS under relatively good control thanks to IVIG or else Theophylline and/or Terbutaline. (And some patients with frequent or infrequent leaks have died, I'm sorry to say.)

We are still currently still in the hospital about to be discharged. It looks like we will be taking Singulair daily and will also be getting ivig . Not totally sure how often but I'm sure it will be monthly like the rest of this community. Ivig seems to be the best thing for scls is the cost of it and the unwilling insurance companys the reason why they try t and t first?

Theophylline and Terbutaline (T & T) are inexpensive and have been recommended for SCLS for decades, so they are the medications of first resort, despite their nasty side effects. However, T & T don't work for everybody. Singulair is completely unproven as treatment for SCLS but is often given nowadays because it is a similarly inexpensive alternative to T & T and it doesn't have many side effects. IVIG is hugely expensive, there is less literature on it (all coming from outside the USA -- although I'm working on fixing that!), and insurance companies here usually deny coverage and one must appeal and fight them. ("Been there, done that!") Thus, it is the medication of last resort in all countries. (You live in Canada where medicine is socialized, so your doctors must be persuaded in order to prescribe IVIG, and they of course are keenly aware of the cost factor.) If it's any consolation, children have been known to outgrow their SCLS problems, although we have several parents of SCLS children (mostly around your son's age) in this community and none of them has reported that their children have been cured just yet. (Perhaps they have been cured, and so they stopped checking in with the rest of us and have thus not reported on their success.) If the diagnosis of SCLS is confirmed, you might like to start a new discussion topic entitled "SCLS in children." That might elicit some of those parents to give you feedback.

I can confirm all that Arturo described everything in correct way. I am one of the parent of child affected by SCLS. My daughter is 5 yrs old and she had the last attack in April 2009. The symptom that is essential for me and my wife to recognize an SCLS attack is the swelling around her eyes, then she had stomach pain, vomit, weakness. In ER doctors said that there was a strong emoconcentration and a low level of albumin. I agree with Arturo, let's start a new topic entitled "SCLS in children" to collect more parents in the forum (I saw this discussion accidentally).