Hello, I was wondering if any children with SCLS have visited Dr. Druey at NIH? Is this even option? If so, how can I, as a parent make it happen? Also, would there any benefits from going to NIH? I understand that Dr. Druey is the expert on this illness, and I would like to visit him along with my daughter at some point. Thank you in advance!

Hey ! I am going to email you back soon . Leila saw Dr. Druey at Nih . Please call them them or email . They are wonderful and he can help . You can also email him at KDRUEY@niad.nih.gov Just tell him about your daughter , he's a wonderful Doctor . He will help in whatever way he can .

Hi Leilas mom and Enny, my grandson Levi was diagnosed with SCLS about a year ago ( age 2 and a half) and started IVIG once a month then 6 weeks and now 8 weeks and everything was going fine until this last infusion where he got a terrible reaction and the infusion had to be stopped. We are concerned and unsure about continuing ivig. My question is what did Dr Drury do for Leilas when you visited and was anything changed/altered in her treatment after visiting

Actually - Dr Druey diagnosed Leila . She was basically undiagnosed , the doctors at children's hospital didn't know what was wrong with her and said t see dr Druey and he could diagnose her . He ruled out other causes , and then diagnosed her .leilas doctors at Childrens national hospital consult with him / consulted with him frequently . He will give you reassurance and make sure your doctors are following the most resent / updated protocol for an acute attack. I recommend seeing him or at least speaking to him to get the most current information on a treatment plan. Leila now gets SCIG which is tiny sub q doses of Ivig that is easier to tolerate . She is doing very well with this treatment. Good luck to you and your sweet boy . Remember , you are not alone . Maybe look into scig ? It's definitely easier on the body for a child. My child didn't handle Ivig well , itmade her too sick . Scig has been a life saver for her .

Hi Ladies- are your children still doing Subq therapy? Our daughter (age 7) also did not tolerate IVIG and we have since switched to SCIG. She was just diagnosed in May 2023. She was diagnosed during her 5th leak (coinciding with parainfluenza) and had no episodes while in monthly IVIG July-December 2023. We began process of switching insurance to SCIG in January and she unfortunately came down with Flu B which ended up in her 6th leak and a hospital stay. Would love to connect with other parents and see how your children are doing now. Warmly, Jordan Drake 

Hello everyone!

I just found this group while doing google searches for SCLS. My 7 year old daughter was diagnosed last week after her third hospital stay. She has had several other mild leaks but I thought they were just allergies since the swelling was mostly located around her eyes and face. We have been referred to the rheumatologist and will see them in a few weeks. We will be doing genetic testing through someone at Yale University as well. I would greatly appreciate any advice or contact you are willing to share. 
Thank you, 

Whitney 

^{Hi Whitney!} 

^{I hate these circumstances, but I am so happy you found this group. Please feel free to text me when you can, 630-903-9318.} 

^{We have an amazing 7 year old daughter, Reverie- who is an SCLS warrior. And an incredible team of Rheumatologists at Duke and UNC. Here's a snip of our story below from right after diagnosis in May 2023..} 

^{"In April 2022, Reverie woke up one day with swollen eyes. We of course thought she was having an allergic reaction and phoned the pediatrician and followed the OTC course of Zyrtec and Benadryl. The medicine didn’t seem to make the swelling go down at all, but after a few days, it subsided and we thought, ok, freak incident.} 

^{Well, just a few weeks after, it happened again. This time I noticed it was when she had a fever during a virus, with cold like symptoms. This prompted my Mom instinct and we knew then this is not allergy related, something else is going on.} 

^{Over the past year, Reverie has had 5 episodes of this periorbital edema, anytime she is sick. We have met outpatient with ENT, had sinus imaging done, pediatric ophthalmology. You name it, we checked it.}

^{On the week of May 5th, Reverie once again developed a typical kiddo cold virus and we knew the eye swelling was following close behind. This time she became incredibly ill and lethargic prompting a trip to the nearest emergency room. Her blood work revealed dangerously low sodium and albumin (a protein), and she was admitted immediately.} 

^{We spent the next 5 days admitted to Duke Children’s Hospital meeting with Nephrology, Endocrinology, Allergy & Immunology, Gastroenterology. All teams were puzzled as to what was causing the swelling and where it was coming from.  Reverie gained 4 pounds of fluid while inpatient, over 10% of her body weight in two days. And by the grace of God, the last team to meet with, Rheumatology, believed they knew what Reverie had.} 

^{After much more testing, and several consults Reverie has received an official diagnosis of exclusion of:}

^{Systemic Capillary Leak Syndrome (SCLS) or Clarkson’s Disease."}

^{Talk Soon!}

^Warmly,

^{Jordan Drake}

^{Raleigh, NC}

^630-903-9318

Welcome Whitney and Jordan to our SCLS Community!