Hi, You' re for sure having à difficult time, and I wish jou à lot of courage and hope you wille support each other. Indeed there is almost not anything known or any experience with SCLS at children,s age. So don't expect à trial on SCLS especially designed for children's age. First of all it is important to know what other diseases are being discussed as à possibility, before focussing at just one. Also their might be other primary underlying problems, which generatie the leaking. (in that case it is not SCLS) The comment of dr Druey criteria are not met, can be important and i would be interested, why that conclusion was made . In à new episode new effort can be made to see of criteria are met now, and diagnosis is checked. The above mentioned Will also influence the things you might expect to happen in the next days or weeks. I think it is important to have an ongoing and close contact with the doctors at the hospital, because of the uncertainty of the diagnosis I hope things Will be clear soon, and wish you better times to come Hiltjo

Regarding your first question, if diagnosis SCLS would be the most apropiate, are you informed about it. ? Are you able to find and to read the artcles which are mentioned on this site? See e.g.description in narrative review 2010. Regarding inclusion in à study: From my point of view I wouldn't care now about that, as long as it does not influence your possibilities getting treatment if necessary (eg IVIG). I'm not living in the USA so I am not capable to know the exact impact in your place. Maybe somebody else on this site can give you informatiion about that. Hiltjo

hi there. my son is 6 years old and he has cls. he was diagnosed nov 2010 but had his first episode mar 2010. he has been through sever cirrcumstances . if you wanna hear his journey to date about the good and the bad my email is erin1980@live.ca. i would love to get to know you guys and offer any support we are able to.

Hi, my daughter's 7 years old, she has been diagnosed SCLS-suffering in 2009 and since then she is having a pharmacological therapy that has brought her to have a normal life with no acute episodes since 2009. For other details, please see my profile or feel free to contact me: alap2@libero.it Bye, Alessandro

Hi, I'm so sorry to hear about your boyfriend's daughter. Poor little girl must be so scared...and so must you. My 4 year old daughter has been diagnosed with SCLS and has had 3 severe episodes to date. We are lucky enough to live in Sydney, Australia, where she receives IVIG infusions once a month and this seems to have kept her episodes at bay for 12 months now. Before the IVIG she was getting episodes about once every 4 months and increasing in frequency. We did get in touch with Dr Kirk Druey but she does not meet the age criteria that the study is geared towards. A shame really. If you would like to get in touch with us, my email is nair_p@hotmail.com. I would be happy to share all the information we have managed to gather over the last two years or offer you and your family whatever support I can. Wishing you well.

Good luck to you all. Such alot to contend with with a child. It is interesting that more cases of SLCS are appearing in children as previously it was mainly seen in middle age people. Wonder if this needs to be revised so that other cases are not missed?

Our has cls you email me at jenniferlthompson08@gmail.com or friend me on Facebook.

Megan, Sorry to hear of your difficulties. I was diagnosed in 2010 by Dr. Greipp at the Mayo prior to his retirement. Are you still in contact or working with him? The main question I have for you is around monthly IVIG treatments? Have you gone that route? It has been working for me since July of 2011. What type of Chemo are the doctors recommending? Does it relate to the MGUS(if you have that)? Also, you mention the specialist in Maryland...is that Dr. Druey at NIH? I did participate in that study and have sent blood samples during my last episode. I definitely recommend taking the time to go there. It will help you better understand your condition and also further the cause of better understanding our condition which can only help everyone touched by this rare disease. By the way, I currently live in NC but am a MN native. Best wishes, Marc