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Support groups for special babies....

Im about to start looking them up cause I need to find out how ppl with the same issues cope and what they suggest doing for a child with ACC and Schienzcephaly (sp).. getting closer to having her and think i need to start learning more.. cause the dr.s are useless at this point

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Asked by mommyoftristan at 4:26 PM on Mar. 2, 2011 in Pregnancy

Level 16 (2,903 Credits)
Answers (13)
  • "Special" babies? OMG.

    Answer by Anonymous at 4:27 PM on Mar. 2, 2011

  • yeah as in. my child needing special help.... please dont tell me your one of those ppl

    Comment by mommyoftristan (original poster) at 4:28 PM on Mar. 2, 2011

  • I am so sorry... I don't know what it is that your baby has but any parent with a special needs baby needs support - I think more so than most..I wish you the best of luck mommy..

    Answer by maxsmom11807 at 4:30 PM on Mar. 2, 2011

  • you know, dont know if thats an honest question or not but im not even gonna ackowledge inconsiderate, stupid, ignorant people.. Thank you maxsmom, yes its gonna be hard, but we are hoping the dr.'s are incorrect on their diagnosis.. Its problems with her brain development and also her growth in general. so far the last 5 visits it been nothing but bad news

    Comment by mommyoftristan (original poster) at 4:36 PM on Mar. 2, 2011

  • Basically when the brain forms two hemispheres join, when a brain is formed normally you have one whole brain but people with Schizencephaly they have two parts that didn't join it can cause delays in learning seizures may also have an abnormally small head, mental retardation, partial or complete paralysis, or poor muscle tone. Some individuals may have an excessive accumulation of fluid in the brain called hydrocephalus. And then the strokes that can happen also effect the brain and can cause damage that way. It is very hard to deal with and complicated to understand.

    Answer by Punkslilncs at 4:41 PM on Mar. 2, 2011

  • is a really good group that I know of .. cause the condition isn't that common there aren't a lot of groups.

    Answer by Punkslilncs at 4:42 PM on Mar. 2, 2011

  • I wish you luck and understand how important it is to have help and support. My DD was not sick when she was botn, although she became very ill in August of 2010 and the Dr's didn't even know if she was going to live. She was in the hospital for 2 months and since then we have been back a couple of times. They still don't know what is wrong with her although having other parents, who children's have seizures, is a great help. My DD's seizures are not typical although the support I started with another mom is a wonderful thing. might be a help to you.

    Good Luck and I will keep you all in my thoughts and prayers!

    Answer by cornflakegirl3 at 4:49 PM on Mar. 2, 2011

  • Thank you ladies... yes punk.. its alot of info to take in.. unfortunately we cant prove she has it till she is here.... we found out 2 days before christmas about the ACC it was just wonderful news (sarcasm)

    Comment by mommyoftristan (original poster) at 4:54 PM on Mar. 2, 2011

  • I'm sorry I don't know where to send u looking for help, but I wish u and ur hubby the BEST of luck, because Im sure itis not easy to go through what ur going through, but ur baby sounds very lucky to have a mommy that wants to know how to care for her the best way she can! GL.

    Answer by PANZONSMOM at 4:59 PM on Mar. 2, 2011

  • There are probably groups on here.

    Answer by Pnukey at 9:57 PM on Mar. 2, 2011

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