Hello out there I just found out my precious 2 1/2 year old grandson has SCLS and I am so scared. The data is so limited with the rarity of this disease. I guess any insight or info anyone can share would be most appreciated and welcome. The few case studies I found were not for one so young

So just as Levis vitals were dramatically improved today he had to have a fasciotomy his left leg had severe compartment syndrome. Our doctors did call Dr Druey and spoke with him. I'm wondering if people could comment on treatment options and successes for someone so young

Dear Levi's grandpa I'm sorry to notice Levi being so young and being in serious trouble because of this disease. I wish you all good luck and strength to deal with this awkward situation. Not very much information indeed is available , but you could look at disorder resources, of this site. Systemic capillary leak syndrome in children Pediatrics. 2015 Mar;135(3):e730-5. doi: 10.1542/peds.2014-2268. Was very recently publicated by dr Dreuy's affiliated group. Hiltjo

My best wishes to you and your son.. The call to Dr. Druey was absolutely an excellent path to take. I see you are from Minnesota. While Dr. Greipp has retired from the Mayo Clinic, they would at least have the most experience in the state. I was diagnosed there. I am also from MN. Now live in North Carolina. While children may need different care, maybe IVIG may be a course of action for your grandson. Keep us posted and if you need support, please reach out.' Marc

Your grandson and family are in our thoughts and prayers. Just know that you are not alone

Thank you Leilas Mom that is very comforting. Was Leilas 3 episodes progressively worse each time? Also how is the sub IGG therapy working ? I have not heard this one only IVIG and theoplhylline

Well my little boy (grandson) Levi made it through this episode he did have a fasciotomy and will be released from the hospital tomorrow. Thanks to all who prayed. Dr Druey thinks he's the youngest (2 1/2 yrs ) to suffer from this disease and we have started the process of sending him and NIH all his records with the hope that data will help move this disease forward whether thats in a cure or treatment for another child that may face this. We will be starting monthly IVIG infusions and hope the side effects will be tolerable.

hi there my son has scls, if your looking for good information check out the form board under the form publilcation of children with scls. it is within the top 20 posted . if you want to email me my email is erin1980@live.ca