Nicole
  • Female
  • Lafayette, IN
  • United States
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Nicole's Friends

  • Rebecca Trendy
  • Lisa G
  • Sara Salinas
 

Nicole's Page

Latest Activity

Lisa Diaz commented on Nicole's status
"Hi Nicole! My son had Medicaid only. What state are you in?"
Apr 5
Nicole posted a status
"Does any one have a child on medicaid only that receives Kanuma? Or has anyone moved states and was there a gap in treatment?"
Jan 31
Rodrigo Sebastião da Silva left a comment for Nicole
"Olá, sou do Brasil me chamo Rodrigo e não sei falar em inglês, vocês tem como mandar algo sou o Kanuma ( valor para o tratamento) ou algo semelhante. Meu filho se chama Mateus e foi diagnosticado quando tinha 6 anos e hoje…"
Jan 26
Nicole replied to Rebecca Trendy's discussion News Story
"What amazing coverage!  I had tears in my eyes watching knowing that although it is beyond rare my boy is not the only one.  You have sweet boys!  "
Jun 24, 2016
Nicole replied to Lisa Diaz's discussion Searching for information
"My son is 4 and has been on Kanuma since January.  He has a port and receives the treatment every other wednesday. We are from Indiana so we did 6 months in indy at the children's hospital, but now have just been cleared for home health.…"
Jun 24, 2016
Sara Salinas commented on Nicole's status
"Hi Nicole To be honest I have no idea, but Martina (my daughter) is going well when she receives the treatment in one hour. She didn´t tell us that she suffered any special effect. She doesn´t like to stay on the bed. She is a kid and…"
Apr 6, 2016
Nicole posted a status
"Has anyone receiving Kanuma ever have it done on a 1 hour drip? My 4 year olds last treatment was accidentally done by staff this way."
Apr 1, 2016
Nicole and Lisa G are now friends
Mar 15, 2016
Nicole and Sara Salinas are now friends
Mar 13, 2016
Nicole replied to Rebecca Trendy's discussion Introducing my family
"Thank you, you have been so helpful.  It has been nice hearing from someone who even knows what LAL is!  "
Feb 6, 2016
Nicole replied to Rebecca Trendy's discussion Introducing my family
"The payment of it completely overwhelms me, I have been told that it cost like $300,000 a year but our Insurance covers at 100% after our high deductible is met.  However, I am nervous that we will get a huge bill at some point.  After the…"
Feb 5, 2016
Nicole updated their profile
Feb 5, 2016
Nicole posted photos
Feb 5, 2016
Nicole replied to Rebecca Trendy's discussion Introducing my family
"Thats great to hear. My son had a port put in, and I use the numbing cream so he doesn't even seem to notice when the IV goes in.  He is going to do every other week with no end time.  This all is so new to me, so anything you can…"
Feb 5, 2016
Rebecca Trendy and Nicole are now friends
Feb 5, 2016
Nicole replied to Rebecca Trendy's discussion Introducing my family
"My son is 4 1/2 and has Autism and LAL.  He has his first treatment this past week.  He can not communicate with me how he feels about any of it.  Can you tell me what your boys have said, or how the treatment has made them feel?…"
Feb 5, 2016

Profile Information

What brings you to LAL Solace?
Education, Support, Sharing, Research, All
Do you or someone you know have a LAL Deficiciency Disease?
Yes
If yes, who is effected by LAL Deficiency?
Child

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Comment Wall (1 comment)

At 10:04am on January 26, 2017, Rodrigo Sebastião da Silva said…

Olá, sou do Brasil me chamo Rodrigo e não sei falar em inglês, vocês tem como mandar algo sou o Kanuma ( valor para o tratamento) ou algo semelhante. Meu filho se chama Mateus e foi diagnosticado quando tinha 6 anos e hoje está com 10 anos de idade e no momento não tem nenhum sintomas, exceto a taxa de gordura elevada (HDL, LDL e TRIGLECÉRIDES) e no entanto não estamos recebendo a medicação porque não foi aprovado no nosso órgão de saúde pública. Nos ajudem nas informações por favor.

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