Hi my name is Enny. I ust registered to this site. My daughter is 5 and was loosely diagnosed with SCLS earlier this year when she was still 4. This month will mark one year since my daughter fell sick and ended up in trauma room and ICU. While doctors though she had meningitis we left home being said she will not have another episode like that again. However, we were back every six weeks in ICU with a hypovolemic shock among other things like eye swelling. This May she was loosely diagnosed with SCLS. We were also told she might be the 10th child in the world with this. We are in Houston so we go to the medical center at Texas Childrens. Since this June she has been receiving IVIGs on a monthly basis. We believe it’s working because she has not had any swelling or episodes since her IVIGs. She does have a mild headache two days after each infusion but goes away after medication. She also complains about occasional minor stomach pain as well. I would love to communicate with other parents as this has been very difficult on our family and the limited information on this illness makes it a bit more difficult.*

Welcome to our SCLS virtual community, Enny! You have probably noticed, by looking through some of the Discussion Forum topics, that you are not alone anymore. We have as members about a dozen parents of children with SCLS, so surely there are many more out there in the world. SCLS is exceedingly rare, and especially so in children, but the point is that you are not alone anymore. I urge you to copy and paste much of the information above on your profile page, under "About me," and also to take a moment and fill out the form appropriately (e.g., your date of birth, gender, and the state you live in). Click on "Edit" on the bottom left of your page, http://www.rareshare.org/users/Itzy11, in order to fix and complete the form. Second, take a look at the Discussion Forum titled "Calling Parents of SCLS Children" and have your daughter's main doctor get in touch immediately with Dr. Kirk Druey at _kdruey@niaid.nih.gov_, because he is finalizing a study of SCLS in children, so he'll be interested in your child's experience -- and he'll have some suggestions for your physician, so he/she won't feel all alone anymore, either.

Thank you so much for your prompt response and welcoming!! I will proceed with your suggestions. At our last IVIG meeting with Immunologists, I believe our doctor mentioned the same doctor from NIH but will confirm At our next appointment this month. thank you once again!!

Hello Enny- It breaks my heart to hear of another child with Scls. I'm sorry you and your child have been going through this . Now that you have found this site, at least you will know that you are not alone . I too have a little girl with Scls. Please feel free to email me , and if there is anything I can do to help please let me know. Best wishes Kristy and Leila

Hello Kristy, Thank you so much for your post. Unfortunatley my daughter, 5, does have SCLS but is doing well at the moment with IVIG treatments on a monthly basis. I would love to get in touch with you via email and kind of share our stories with each other about our girls and this health condition. I'm not too sure how to find your email through this website but my email is enny04@gmaill.com. Best Wishes, Enny and Itzy

Hi Enny and Itzy, Glad to hear you are doing better now. Our son has also been diagnosed with SCLS. Please feel free to email me or let me know if you want to exchange phone numbers and we can chat. Jen, Kevin and Connor

Enny and Itzy , I did try to email you . How are you both doing ? Hoping all is well. Kristy and Leila

Hi jen, Please feel free to email me at enny04@gmail.com. I would love to talk to you about your son and my daughter in regards to SCLS. Thank you!