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SCLS in child

sclsusr1 Message
15 Mar 2010, 07:24 PM

Hello All, I stumbled upon this site by accident, and I'm glad I did, especially with the premier today on the Discovery Channel about an SCLS episode. This is a very helpful forum especially for a disease as rare as SCLS and I'm grateful for the various posts here already that have given me so much information on this subject! My daughter Rebecca, who's now 5 year old, was diagnosed with possible SCLS when she was 2 years old, back in 2007. Her initial symptoms (in Jan '07) were a fever and puffiness around the eyes and she was given *Childrens Tylenol* for her fever on her doctors advice. Over a few days she become really lethargic. So we rushed her to the ER at SIUH (staten island, NY). Her condition was initially misdiagnosed despite the best efforts of some very helpful and amazing staff, and she was given excessive fluids, she bloated to thrice her size etc., and her condition worsened before she got better and was discharged after 2 weeks in the ER. 6 months later, in June 2007 she had the same symptoms for which she was initially given Children's Tylenol, and when she became lethargic, admitted to SIUH. After a couple of days of stabilizing her, the doctors suggested we transfer her to a childrens hospital as they could not figure out her condition, so she was then transported via ambulance to the LIJ Schneider childrens hospital, in LI, NY. One of the doctors at SIUH even printed out some articles about SCLS thinking it might be a possibility and asked us to share it with the doctors at Schneiders. The staff there did an amazing job and treated Rebecca quite similarly to what is described on this site (controlled fluids, steroids, diuretics etc.). Again discharged after about 2 weeks in the ER. Rebecca has fortunately not had a full blown episode since June 2007. She has had many follow up visits with different specialists (cardiologist, allergy/immunology, pulmonary)etc., and they have so far given her a clean bill of health. One of the common elements prior to both episodes of SCLS was that Rebecca was given children's Tylenol for her fever. Since this was the only common element prior to both her SCLS episodes, we were adviced not to give her any sort of medications for fever/pain. A subsequent controlled test done at LIJ proved that my daughter could tolerate Motrin when she was well. We have stayed away from Tylenol since (she had no issues with the Infant tylenol prior to the first episode). * I'm not sure if there is any link between childrens tylenol and SCLS but thought I would put this out there for other parents to consider.* Rebecca now has what the doctors think is a mild asthma like condition, so she has been on singulair during the last 2 winters. Only after reading the posts here did I realize that a nasal congestion / runny nose could also be the symptoms of SCLS and not just a possible upper respiratory illness, so we are scheduling some more tests for her. She also uses an inhaler very rarely which seems to help with her breathing. She has not had a fever in the last couple of years, and has been taking her flu vaccines on a priority basis. Otherwise, shes been as active and normal as a 5 year old can be! I want to wish everyone else on this forum the best of health and a speedy recovery. Please do let me know if you need any additional details about my daughters episodes. Thanks & Regards
cmanmommy Message
18 Mar 2010, 04:55 PM

I was glad to see this post and the letter you sent to my email. Having a child go through this hard. My son's doctor's orginal thought was an allergic reaction to Motrin so we are not giving him that anymore. Since that time, he has had two ear infection, pneumonia and cold like symptoms with no attacks. So, like you said don't know if there is a connection, but we will take no attacks.