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SCLS case in a child

alapenna Message
15 Oct 2009, 05:08 PM

I want to share with you with an SCLS experience for a child, using this fantastic and useful website. My daughter has been diagnosed SCLS in May 09. She has 4 years old and I know that it is a very rare case that SCLS has been diagnosed to a child. Since May my daughter's doctors, thanks to the help of dr. Greipp, set up a therapy based on theophilline and verapamil. She had 4 SCLS attacks, the first one in February 08, the last one in April 09. Every attack was triggered by a common flu with fever. In that period, every time she had fever, she had a SCLS attack. From April to now, under theophilline and verapamil somministration, my daughter had flu two times (first one in August and second one in October) and nothing happened. This is very good for us and for the doctors that have her in care. I know that is not definitive result, but it is a fact that something has changed, in better. Furthermore, we decided to don't vaccine her against H1N1 flu. Thank you dr. Greipp, for your help, for your dedition, for you research on this syndrome. Sincerely, A. Lapenna
aporzeca Message
16 Oct 2009, 12:15 AM

Thank you so much for letting us know about this unusual pediatric case. We pray that your daughter will outgrow her SCLS, or at least be able to keep her illness under good medical control with these medications.
cmanmommy Message
29 Dec 2009, 08:15 PM

I am so glad to read about another child. My son is four as well (he will be 5 in April). I am going to recommend this site to his peditrician and dr in Hartford in an attempt to him as best we can.
alapenna Message
30 Dec 2009, 01:04 PM

Believe me, I understand you and your familiar situation very well, I feel the same some months ago. I can tell you that now, with SCLS diagnose, you know how to fight against this syndrome: - in acute phase now medicians know how to do. It is important that you should have a written procedure by IC medical staff that has diagnosed SCLS to bring with you and to present in hospital when this episodes should happen again - there is an empirical therapy that in my daughter case is really working. As I wrote, since the time she has started therapy, she had 4 flu episodes with no consequences at all. Before therapy start, since my daughter was 3 yrs old, every time she had flu she had an acute SCLS phase. Please read dr. Greipp experience with 2 child cases in a previous post in this forum. His words were a real relief for me and my wife. - an important research started by NHI to study and undestand better this syndrome. I hope this research will bring a concrete result. I would really appreciate if we could continue in keeping in touch and in sharing every information we think it could be useful, since SCLS in child has very few cases diagnosed in the world. One question: the second, more severe, attack in your son was triggered by a flu, as the first one?
cmanmommy Message
30 Dec 2009, 05:45 PM

Hard to tell the trigger, because we didn't know what to look for- He had a fever of 103 for two days that went away. After it broke, he had a runny nose and the fever returned only to be diagnosed with an ear infection. I told my husband about your daughter and it put us at ease to know there are other children regardless of how few. I will keep in touch. It will be nice to have some support through the episodes and decision making pricess going forward. We do currently have a protocol in place that was written by his Dr at Children's.
kbas719 Message
25 Jan 2010, 01:18 AM

Oct.22 2009 my16y.o daughter arrived via ambulance to the ER, with low grade fever, running nose, abd.pain, fanting, high concentration of bld, dec albumin and very very low bld pressure. immed. she was giving continuous bolus IV fluids, to correct her low bp. 5 days later my daughter developed pulmonary edema, along with many more complications and had to be intubated. she recovered, and was discharged on nov 6, 2009. with a diagnosis of influenza A pneumonia, upper resp. infection. She now has to be followed my a cardiologist d/t the remaining fluid around her heart. On 1/21/2010 my daughter had the same recurrent episode from 3 mos. ago. this time i inform the hospitial not to do bolus iv fluids. She was recently dx with ISCLS by one of the attended and she is currently still in PICU, only with supportive care. I am lookin for help in this mater
josee Message
25 Jan 2010, 02:47 PM

Bonjour Kbas, j'ai eu des attaques très sévères durant 8 mois, depuis plus d'un an, je recoie des traitements d'immunoglobulines sur une base mensuel. Depuis ce temps, j'ai n'ai eu aucune autre attaque. Malheureusement, vos compagnies d'assurances ne veulent pas toujours payer ce traitement car il est très dispendieux... c'est dommage car dans mon cas, ça fonctionne très bien. j'espère que cette information vous sera utile. bonne chance à votre fille.
Ritz Message
27 Jan 2010, 10:34 PM

Transalation Jossee Post I had very severe attacks in 8 months for over a year I recoie treatments of immunoglobulins on a monthly basis. Since that time, I have had no other attack. Unfortunately, your insurance companies do not always want to pay for this treatment because it is very expensive... it's a pity because in my case it works very well. I hope that this information will be useful. good luck to your daughter.
alapenna Message
28 Jan 2010, 09:44 AM

My daughter (5 yrs old) take theophilline and verapamil every day and it works well.
cmanmommy Message
28 Jan 2010, 01:54 PM

The attacks are scary. Connor was admitted to the hospital on Monday (1/26/10) with a fever of 105.5, cough, runny nose and leg pain. His blood pressure was fine as were is albumen levels. He was observed for two days and then released the SCLS did not trigger this time- he was diagnosed with atypical pneumonitis and send home on a zpack. This happened less than a month after his last episode. My advice to you is to gather as much information as possible and talk to her doctor. Our doctor wrote a protocall for how Connor is to be treated upon presentation in the ER for care and the staff there has been grateful. With so few known cases, all the medical treatments are antidotal, but when talking about your own child you will grasp at straws to get them better. There has been talk about asthma meds and IVIG treatments working. Hope this helps.
kbas719 Message
28 Jan 2010, 11:39 PM

Bonjour Josee!, and hello Alapenna,and Cmannommy Thank you all for all your support. I spoke with Dr. Greipp, who was very informative, and he agreed to speak with the ICU Drs, and her primary,which he did "great guy", My daughter was discharged yesterday,1/27/10 and giving the following medications theophylline 100mg 3x daily, terbutaline 5mg 4x daily, and lasix. Her edema has decrease somewhat. A protocol has not been implemented as yet. Any suggestions?.
cmanmommy Message
29 Jan 2010, 01:47 AM

I can send you a copy of what we have for my son if you give me your email.
kbas719 Message
2 Feb 2010, 02:38 AM

Hello Cmanmommy, Thank you, my email is