Special Needs Board Information Log

Discussion in 'Special Needs Support' started by Deb&Matilda, Nov 24, 2008.

  1. Deb&Matilda

    Deb&Matilda Mum to baby Matilda xx

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    Hi all,
    A few of us who were up late one evening thought it would be nice to keep a log of why everyone is here so any newbies or oldies can see all the people are going through the same things in order to ask for any advice etc.
    No one as to provide any information they are not happy about giving this is obviously just something nice to keep before we get busy on here. So I have listed below the information which might be useful once we have got a few responds I will put this into some sort of order for everyone. Obviously you can add any further information which you might think useful:

    User Name:
    Name:

    Child/ren Name/s:
    Chid/ren DOB/s:
    My Child/ren is/are fighting:

    Any extra Info:

    Ok think that is it if anyone thinks of anything let us send us a post otherwise hope to see you all replying so we can all get to know each other slightly better xx

    Speak Soon
    Debra
     
  2. Deb&Matilda

    Deb&Matilda Mum to baby Matilda xx

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    Dont want to forget me when doing it or seem like I am not responding myselfxxx

    User Name: Debra&Matilda
    Name: Debra (Age 27)

    Child/ren Name/s: Matilda Sue
    Chid/ren DOB/s: 24/05/2008
    My Child/ren is/are fighting: Spina Bifida, Hydrocephalus, Epilepsy, Arnold Malformation, Dislocated Hips and Knees and Talipes, Eczema.

    Any extra Info: Think that is it unless anyone else thinks of anything else xxx
     
  3. Tegans Mama

    Tegans Mama home edding mum of 2

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    User Name: hr.lr.07
    Name: Lea (age 20)

    Childs Name: Tegan Dakota
    Chids DOB: 17/8/08
    My Child is fighting: Spina Bifida, Hydrocephalus, Chiari Malformation, Mild Talipes, Hip displacement, Tethered Cord, and reflux (possibly caused by hydrocephalus and/or Chiari malformation)
     
  4. Poloma

    Poloma Mum to 3 Little Stars

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    Lovely Idea Guys xXx :happydance:

    User Name:Poloma
    Name: Sharon
    Child/ren Name/s: Noah
    Chid/ren DOB/s: 16/08/05
    My Child/ren is/are fighting: Currently being assesed for ASD
    Any extra Info:

    Noah has an appointment with the Occupational Therapist on the 1st Dec, hope to have some more info after that xXx
     
  5. 1st_baby

    1st_baby Guest

    User Name: 1st_Baby
    Name: Melinda

    Child/ren Name/s:Maxim
    Chid/ren DOB/s: May, 16. 2008
    My Child/ren is/are fighting: Hypospidias

    Any extra Info: We will have it checked out more by a Urologist on Dec.18 th
     
  6. JASMAK

    JASMAK Mom of three

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    User Name: JASMAK
    Name: Tina

    children's Names: Jasper, Makena, and Kelana
    DOB's: Jasper, April 8, 2003; Makena, January 4, 2005; Kelana, August 16, 2010

    Makena was diagnosed with: Pervasive Development Disorder (PDD-NOS), October 29, 2007 and Apraxia (DCD), February 8, 2011
     
  7. Emmea12uk

    Emmea12uk The Folic acid police!

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    Name: Emma

    Child/ren Name/s: Tomas Oliver
    Chid/ren DOB/s: 4 July 08
    My Child/ren is/are fighting: Spina bifida & hydrocephalus

    Any extra Info:
     
  8. massacubano

    massacubano Guest


    User Name: massacubano
    Name: Kathy

    Child/ren Name/s: Bobby 5 (and his siblings ages 11, 7, 3)
    Chid/ren DOB/s: 2003
    My Child/ren is/are fighting: Autism

    Any extra Info:
     
  9. who's_mummy

    who's_mummy Well-Known Member

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    User Name: who's_mummy
    Name: Gemma

    Child/ren Name/s: William, Oliver & Harry
    Chid/ren DOB/s: Will - 16.03.04, Ollie - 09.08.05, Harry 26.06.07
    My Child/ren is/are fighting:William has inherited Charcot Marie Tooth Disease (CMT) from his Dad. Ollie is clear and Harry is just getting to the age where we noticed Will having problems so should be able to tell soon.

    Any extra Info:
     
  10. samfam

    samfam New Member

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    User Name: Samfam
    Name: J (Age 49)

    Child/ren Name/s: M
    Chid/ren DOB/s: He's 5 now.
    My Child is living with: Downs Syndrome, 2 much older siblings.

    Extra Info: Well, "Downs Syndrome" (or Down Syndrome in the USA) seems to me to come with huge Gifts, random health-troubles, cognitive limitations and simply being. different. But what you do get is a load of LOVE.
     
  11. Lyns

    Lyns Mama to two <3

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    User Name: Lyns
    Name: Lyndsay

    Child/ren Name/s: Morgandie
    Chid/ren DOB/s: March 13th 2007
    My Child was fighting: 12 month fight against Neuroblastoma, a childhood cancer.

    Any extra Info: Treated by Gt Ormond St. She's clear for now (and hopefully will stay that way), but am happy to provide any support to any parent coping with a childhood cancer. We have check-ups every 3 months.
     
  12. Miss_Oblivion

    Miss_Oblivion Well-Known Member

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    user name. miss_oblivion
    name: wendy

    childs name: damian
    DOB: 07/052005
    My child is living with: autism and possible epilepsy
     
  13. Nikkinoonoo

    Nikkinoonoo Mummy to a gorgeous girl

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    User Name: Nikkinoonoo
    Name: Nikki

    Child/ren Name/s: Jessica Norma Margaret Perrin
    Chid/ren DOB/s: 4th June 2008
    My Child has: Fibular Hemimelia

    Any extra Info: Jessie will be having an amputation (from just below the knee on her right side) when she is around 10-12 months old. Hopefully performed at Stanmore orthapedic hospital. She will then have a prosthetic lower limb fitted.
     
  14. bex

    bex Our little princess

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    User name:Bex
    Name:Rebecca
    Child:Niamh Daisy
    DOB:November 2008
    My child has:pierre Robin Sequence
     
  15. hotsexymum

    hotsexymum mum of 4

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    User Name: hotsexymum (mandy)
    Name: mandy 36

    Childs Name: harry allison
    Chids DOB: 3/9/2008
    My Child is fighting: is being tube feed via pump every night and not growing well he is 10 months and not sitting up and has to be on milk free diet and suffers with exmar
     
  16. 2bmum

    2bmum Me, my lil man + WTT 2011

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    User Name: 2bmum
    Name: Claire (25)

    Child/ren Name/s: Oliver David
    Chid/ren DOB/s: 04/06/09
    My Child/ren is/are fighting: Sluggish heart valves, thickening of the chamber walls, heart murmur, tissue disorder and lung problem.

    Any extra Info: Oliver is yet to have his tissue disorder and lung problem properly diagnosed but it is thought they are both linked to the thickening of his chamber walls. We await an appointment with a genetisist. He is also slow to develop and has had faliure to thrive.
     
  17. Emmea12uk

    Emmea12uk The Folic acid police!

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  18. Lottie86

    Lottie86 Mummy to Findlay & Iona

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    I hope it's ok for me to join

    User Name: Lottie86
    Name: Lottie

    Child's Name: Findlay
    Findlay is: Almost 14 months old
    Findlay has: a very rare chromosome abnormality (he has a duplication on 12q), milk protein allergy, epilepsy and we are working hard to overcome oral aversion

    Any other info: Due to his chromosome disorder he has muscle tone problems (which caused very severe reflux which required surgeries to fix), his internal muscles are also poor and so he is on medication 4 times a day to make his stomach empty and has to be on at least 2 different laxatives twice a day as he cannot poo otherwise due to his bowel muscles not working properly, he has feeding problems (he is fed via gastrostomy tube), severely delayed development, sensory issues, poor weight gain and he has a variety of types of seizures. By the time he was 6.5 months old he had spent over 4 months in hospital. As the chromosome disorder he has is so rare we don't know what the long term prognosis is.

    He has a fabulous team of speech therapists, occupational therapists, physio, developmental consultant, dietician, GI consultant, neurologist etc though :)

    This is my very special tiny man (he is now 12lb 10oz!)
     

    Attached Files:

  19. Emmea12uk

    Emmea12uk The Folic acid police!

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    Of course it is lottie! Welcome to the group. I have a friend on facebook with a child born in December with a chromosome disorder.

    If you ever want a chat, feel free to message me!
     
  20. baby.love

    baby.love Guest

    User Name: Baby.Love
    Name: Leah

    Child/ren Name/s: Ethan
    Chid/ren DOB/s: DEC 05
    My Child/ren is/are fighting: Autism & ADHD
     

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