Happy New Year to everyone! I am putting out this call to the members of this community who are parents of children with SCLS -- alapenna, cmannmommy, erintyalor, jessclark, kbas719 and sclsusr1. (Five of the six children are between 3 and 6 years old, and the other is a teenager.) The medical literature says that (a) SCLS is typically a middle-age disorder and is thus exceedingly rare in children and (b) that children tend to outgrow their capillary leak problems, and thus don't need medications during the rest of their lives. However, children in North America and Europe constitute nearly one-tenth of the nearly 70 SCLS patients in this virtual community, and we would like to know (1) which medications if any your children have taken; (2) to what extent those medications have stopped all episodes; and (3) whether any of the children have stopped taking their medications and are "cured." This information will be of use to the current and incoming parents of children with SCLS, and I will bring it to the attention of Dr. Kirk Druey at NIH who is doing serious research on the biomedical roots of SCLS -- so far, only on adults. If you wish to be contacted by other parents or are interested in having Dr. Druey study your child, please provide your email address.

Connor currently does not take any medications on a daily basis. What he does have is a standing order for steriods (orapred). When we feel like he is starting to have an attack (ie stomach and leg pain and slight swelling), we start the steroid treatment. We have not had to use the steroids yet. This order came about after his last attack. Please feel free to give my email to anyone it would help. It is sweetpeamoose9900@yahoo.com. Just ask themto put SCLS in the title. Thanks for all you do!

i thought taylor would be getting ivig and singular when he left the hospital but so far its just singulair that hes getting. he has had 3 attacks in 6 months. and he has only been on it for 2 weeks so its to early to tell if its working. when taylor was in icu he was givin 4g/kg of ivig. to the best of my knowledge it was not for SCLS specificaly. from what i have read the normal dose for SCLS pervention is 2g/kg per month. im currently trying to gather information on the benifits of ivig in SCLS. if anyone knows a specific web site that would help my case i would be greatful. i have told my sons doctor about this website to give him some insight. p.s sorry i didnt start this topic earlier

taylor episode always have started with his eyes swelling aswell. just like alapenna's child

Erin: I will gladly send you all that you and your doctors need to know about SCLS and IVIG -- namely, medical journal articles and doctor testimonials. Write me an email at _aporzeca@american.edu_

taylor is recieving monthly ivig treatments at 2g per kilogram as well he takes 15 ml of prednizone the night before each treatment. he also is still on his singular

I'm very glad to hear they are trying IVIG on Taylor!

Apologies for the delay in responding to this query... Rebecca's last SCLS episode was back in June '07. Since then she has been taking Singulair. In 2008 & 2009 she was on Singulair only for a couple of months each year during the allergy seasons. Since 2010 she has been taking singulair on a more regular basis and added Flovent to ease her asthma like symptoms. So far the combination of Singulair and Flovent (and at times Xopenex) has seemed to work for her. Rebecca last used Prednizone after the '07 episode and her pediatrician has so far not seen the need to use Prednizone. At the first sign of a cold or cough our standing instructions are to start using the rescue inhaler Xopenex, and that seems to control her symptoms. Rebecca does complain of a stomach pain from time to time but the pediatrician thinks it is diet related. So far these pains disappear in a day or so with no medication.

Many thanks for the update! It could well be that Rebecca has "outgrown" her SCLS, just as medical legend has it that children may be able to do -- based on a couple of old cases, by the way. If she really had an ongoing SCLS condition you probably would know it, because I haven't seen or heard of any evidence that Singulair can control it.

Thank you. And we sincerely appreciate and are ever grateful for everything you have done and continue to do for this community. We are hopeful that Rebecca has indeed outgrown her SCLS, but with SCLS we can never take anything for granted, so we continue to keep a close watch on her every move. One of the theories that were floated after the second SCLS episode that Rebecca had was that her condition may have been an allergic reaction to either Children's Tylenol or Children's Motrin. Tylenol was used to control her fevel prior to both episodes, and since then she has not used either of those products. Rebecca was able to tolerate a controlled test done for Motrin when she was well. There has been no conclusive evidence to link any of this to SCLS. If Rebecca's condition is indeed an allergic reaction to something other than Tylenol, then Singulair may be playing a part in controlling her allergy symptoms from worsening and becoming a full blown SCLS like episode. We are keeping everyone affected by SCLS in our thoughts and prayers. Thanks again.

just wanted to update that since taylors last episode in dec 2010, and since he started his ivig treatments and his daily dose of singular he has been in the hospital with 2 episodes of the flu and also had a bad cold. during these times there were no signs and symptoms of cls.

That's excellent news! It confirms the experience of several of us adults: before we went on IVIG, any cold or stomach virus or period of stress was likely to trigger an episode of SCLS. Since going on IVIG we seem to be, indeed, immune to all the previous triggers.

also just to add taylor also has had a picline in for much much easier axcess for blood work and treatments. when he has an episode it was near impossible to get blood. at the end of march he will be getting a portacath

Hi all. My daughter is now 6 years old and has been diagnosed SCLS in May 09. She had 4 SCLS attacks, the first one in February 08, the last one in April 09 (she was 3-4 yrs old at the time). Every attack seemed to be triggered by a common flu with fever. The evident symptoms were: eye swelling, weakness, stomach pains and vomiting. In that period, every time she had fever, she had a SCLS attack. Since May 09 my daughter’s doctors, thanks to the help of dr. Greipp and dr. Marco Cicardi, set up a therapy based on theophilline and verapamil. At the moment my daughter weighs about 21 kgs and she takes theophilline 150 mg twice a day and verapamil (20 mg in the morning, 10 mg in the evening). From May 09 until now (March 11), under theophilline and verapamil therapy, my daughter had flu many times, as for every children, and nothing happened. A couple of times, after a flu, we noticed a small eye swelling probably due to a lower level of theophillyne (as clinical analysis confirmed us just after these episodes).ù If you want to keep in contact with me, please write to: alap2@libero.it