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Author Topic: New to this site  (Read 5774 times)

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Offline #1 mom

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  • Posts: 114
New to this site
« on: August 04, 2008, 02:40:42 am »
   

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Hi, I'm new to this site. I have an adopted son who will turn 2 August 30. His birthmother was HIV & Hep C +. When we met him in the NICU his initial tests were negative and he was getting AZT prophylactic. He was premature somewhere between 28-31 weeks gestation and weighed 3# 3.5 oz. At about a month while still in the NICU he became very anemic. Before transfussing him they tested him again and he was still negative. I was told that it was unlikely with two negative tests that he would become +. After 48 days in the NICU he was well enough to come home. He did well and gained 1 # in the first week home.    Our pediatrician sent us to an infectious disease doctor right away to be sure everything was done right. The ID examined Lucas and said he felt that Lucas was negative but ran tests again. This time he had a detectable viral load.  His viral load skyrocketed between his initial test, confirmatory test and test at the start of medication (~1mo time). Fortunately he responded to the cocktail and quickly became undetectable and stayed that way. His CD4 has always been normal. Once he was over 18mo. we confirmed he does not have Hep C. 
Lucas also has Cerebral Palsy but has done amazingly with therapy. His deficits are so slight most people would not notice now. He is a bright, loving, happy child and I'm lucky to be his mom. I want to do what is best for him. If there is anyone that has an HIV+ child that could give me tips I would appreciate it. I'd also love to hear from anyone living with HIV who can give me advice. Thank you.     
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Amy

Offline HopeandCope

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  • Posts: 55
    • Hope and Cope
Re: New to this site
« Reply #1 on: August 18, 2008, 10:53:21 am »
First LOVE and HUGS to you!  Second, here is a blog site of a woman that runs an orphanage for HIV kids http://fayaorphanage.blogspot.com/2008/08/kids-have-arrived.html Her name is Megan and is pretty fantastic!  Also, there is a single mom named Lisa, foster mom and parent of HIV+ child.  Her blog is http://www.little-did-i-know.blogspot.com/

Hope this helps!

Love, Jude
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Jude
Hope and Cope Support Site
A Safe Place for Families & Friends of HIV+ People
http://hopeandcope.blogspot.com/

Offline HopeandCope

  • Member
  • Posts: 55
    • Hope and Cope
Re: New to this site
« Reply #2 on: August 18, 2008, 11:37:08 am »
I researched some books for you that may help.

Handbook of Pediatric HIV Care (Paperback)
by Steven L. Zeichner

Kids With AIDS (The Aids Awareness Library)
by Anna Forbes

Be a Friend: Children Who Live With HIV Speak
by Lori S. Wiener

Jude   :D
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Jude
Hope and Cope Support Site
A Safe Place for Families & Friends of HIV+ People
http://hopeandcope.blogspot.com/
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