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