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SCLS ER fact sheet.

photoqueen8 Message
20 Apr 2009, 08:05 PM

To Allenoverland, after reading your experience with ER visits and having the same experiences with my daughter I would live very much to get a copy of the fact sheet you spoke of. My daughter has been dianosed with SCLS recently. We are finding this web site very helpful.
alapenna Message
30 Apr 2009, 08:01 PM

Hi, recently my 4-years-old daughter has been diagnosed SCLS. She had 4 SCLS episodes in 14 months. Since in literature there is very few articoles concerning SCLS in childhood, I would really appreciate to know and share with you experiences concerning SCLS in child. I would be particularly interested in pharmacological therapy adopted and about its efficacy.
photoqueen8 Message
1 May 2009, 01:23 AM

alapenna, I don't think I will be much help. My daughter is 41 years old. In our research we find that sclc is even more rare in children. We're leaving Monday for Rochester , Minnesota for an appointment with Dr. Philip Greipp at the Mayo Clinic. From what we read he is the only doctor in the states that is knowledgeable about scls. How is your daughter doing now? Is she on some type of treatment? I wonder if your docs could get in touch with Dr Greipp? Please let us know how things are going. Photoqueen8
greipp Message
1 May 2009, 03:29 AM

Hello, I too would be interested in Alan's ER sheet. Sounds like a very good idea and I know other patients who have one. I have seen 2 children. Both responded to theophylline and terbutaline, one with added Singulair. We are submitting a paper on 25 patients actually seen at Mayo including the two children. Both children outgrew their SCLS. such remissions are seen in childhood asthma and certain autoimmune diseases in children. Phil Greipp
alapenna Message
2 May 2009, 11:58 PM

@photoqueen: my daughter is better now, she is still ospitalized. This time she had an acute phase that lasted less than 48 hours. Fortunately my daughter responded very well to corticosteroid (previoulsy, an attack was stopped and onother one had no heavy consequences at all), so swelling and leaking phase was stopped after this pharmac by IV somministration. After that, a diuretic helped in loosing liquids. Now she has some pain in walking (i guess some muscular problem after legs and feet swelling) and a strange fever (every 1-2 days high temperature, and after that nothing); doctors are investigating about that. The encouraging thing is that my daughter is taking corticosteroid (deltacortene) and even if she had flu and fever in the last week nothing happened. During the last year, a flu or a fever, even very smooth, caused a shock. Anyway, doctors are studying a proper treatment for the follow-up period. @Dr. Greipp: I wish to thank you, dr. Greipp because your words are very encouraging for me and my wife. In the hospital were my daughter is now, this is the first case of a SCLS in a child. Since doctors that are taking care of my daughter are just studying a proper treatment, and there are very few cases of SCLS in childhood, I think your suggestions are very precious and so I will surely pass to them. I was asking myself if they could contact you by email in order to have suggestion about dosage and other details about treatment in follow-up phase.
greipp Message
3 May 2009, 03:04 AM

You may want to have the doctors email or call me at Mayo. Phil Greipp greipp@mayo.edu 507 284-9094
alapenna Message
3 May 2009, 12:02 PM

I wish to thank you very much, dr. Greipp. Best regards, Alessandro Lapenna
nickdcamp Message
17 Nov 2010, 01:45 AM

May I have a copy of the ER sheet please! Thanks, nickdcamp@aol.com