Special Needs Board Information Log

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

  1. Lottie86

    Lottie86 Mummy to Findlay & Iona

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    I have just updated Findlay's one above
     
  2. going_crazy

    going_crazy Still learning.....!

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    Hi all, not sure if I can join or not?

    Child/ren Name/s: M
    Chid/ren DOB/s: 9/10/10
    My Child/ren is/are fighting: TGA, VSD and Pulmonary Stenosis

    Any extra Info: My daughter was diagnosed after birth with heart disease. She had her first heart surgery (B-T shunt fitted) when she was 4 days old :cry:. She's now 9 days old and getting stronger each day. She will hopefully be coming home soon so that she can grow stronger for her open heart surgery when she is about 8 months old. I'm scared about this so much :blush:


    Anyway, I hope you don't mind me being here xxxx :hugs:
     
  3. Emmea12uk

    Emmea12uk The Folic acid police!

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    Of course you should be here! I got so much support here when my son was born and ge required surgeries.

    :hugs: I know how hard it is for you right now. There is nothing I can say either that is much use. Take each day aa it comes and stay strong. They are stronger than anyone can imagine xxx
     
  4. scottishgal89

    scottishgal89 *Mummy To a Princess*

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    User Name: DaisyChain
    Name: M

    Childs Name- S
    Childs DOB- 20/11/09
    My Child is fighting- Infantile Spasms- a rare type of epilepsy

    Any extra Info- Daughter started having seizures at 7weeks old. Diagnosed with IS...eventually. Been on lots of meds with horrible side effects, none of which have worked. About to start Ketogenic Diet. NHS has given up on her and expect me to aswell. If diet doesn't work, will take her to America to see a specialist there. S has the development of a 2month old if your lucky. Can take thousands of seizures daily and clusters of 100 at a time with just a few seconds inbetween.
     
  5. Emmea12uk

    Emmea12uk The Folic acid police!

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    Welcome daisychain! I hope you find some support here!
     
  6. Midnight_Fairy

    Midnight_Fairy New baby J

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    Oct 15, 2009
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    Child/ren Name/s: M
    Chid/ren DOB/s: august 2004
    My Child/ren is/are fighting: Autism

    Hope everyones ok xx
     
  7. smileylexie

    smileylexie Guest

    User Name: Smileylexie
    Name: Lexie
    Child/ren Name/s: Maisie
    Chid/ren DOB/s: 3 years old
    My Child/ren is/are fighting:Down's syndrome

    Any extra Info:

    Hi everyone,
    i'm new on here but looking forward to getting to know you all!
     
  8. Emmea12uk

    Emmea12uk The Folic acid police!

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    Hi!! Welcome!
     
  9. capel

    capel Well-Known Member

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    Just saw this
    User Name: Cape
    Name: Carolina
    Child/ren Name/s: Sofia
    Chid/ren DOB/s: 11 september 2005
    My Child/ren is/are fighting: She was dignosed with HIE (hypoxic ischemic encephalopaty) That means she is brain damaged because of lack of oxygen in her brain during birth. Her development is very delayed and she also has epilepsy.
     
  10. Emmea12uk

    Emmea12uk The Folic acid police!

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    Welcome capel!! :wave:
     
  11. esperanzamama

    esperanzamama Well-Known Member

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    User Name: esperanzamama
    Name: Holli

    Child/ren Name/s: Brennan
    Chid/ren DOB/s: 4-2-09
    My Child/ren is/are fighting: Talipes/ Clubfoot
     
  12. Aidedhoney

    Aidedhoney Mum of Nats & Alex

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    Hello

    I tend to lurk but here is our bits

    Mum to Alex 18 months, born with a CHD (Truncus Arterosus), had 2 open heart surgery's and during the second one at 17 months Alex suffered a stroke.

    This has left Alex with mobility issues (right leg and left arm) also no one knows how he has been affected mentally or how he will develop in the future.

    Alex is awaiting cardiac cath for shunts to be put in to the arteries going to his lungs (due to be done 8th march)
    Awaiting MRI scan just before 2nd bday to assess the damage
    Gets physio/Ot and speech and languge support (all say hes doing fabbie)
     
  13. lottie77

    lottie77 Mum of 2 girls and 1 boy

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    User Name: lottie77 & my name is Claire

    Child/ren Name/s: Rebekah
    Chid/ren DOB/s: 13th Jan 2011
    My Child/ren is/are fighting: Down's Syndrome
     
  14. JASMAK

    JASMAK Mom of three

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    Hey Lottie! Your little girl is BEAUTIFUL! Congratulations! Any medical difficulties from her DS?
     
  15. BabyBumm

    BabyBumm Well-Known Member

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    User Name: BabyBumm
    Name: Lucy

    Child/ren Name/s: Tommy
    Chid/ren DOB/s: May 2002
    My Child/ren is/are fighting: Currently being assessed for autistic spectrum

    Tommy(8) is my 2nd child (others are 10, 4 and 6weeks)
    I have always known something was not quite with Tommy, but all the professionals I spoke to said it was my personal circumstances that made him the way he is (domestic abuse and also his step father passed away suddenly when he was 6)

    It was only 6 months ago that another professional read a list of concerns about Tommy that I had written and she referred us straight away. We are now on the first step of the assessment ladder. It has taken me 6 years to get here but I am determined to get my son the help he needs and has been denied for so long!
     
  16. x Michelle x

    x Michelle x loves her babies

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    User Name: mherkes
    Name: Michelle

    Child/ren Name/s: Tabitha
    Chid/ren DOB/s: Feb 2011
    My Child/ren is/are fighting: Congenital Hypothyroidism

    Hi ladies, been lurking a while on here now!
    My little angel is 10weeks and was diagnosed at birth with Congenital Hypothyroidism. This can lead to diminished mental capacity and slow growth but she was diagnosed really fast so we're just keeping our fingers crossed. she follows her weight centiles perfectly and now i'm just always on the lookout for the next milestone!
    thanks Emma for putting me intouch with your friend :)
     
  17. Marleysgirl

    Marleysgirl Mum to a SCBU Warrior!

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    User Name: Marleysgirl

    Child/ren Name/s: Andrew
    Chid/ren DOB/s: August 2009 - 11 weeks premature
    My Child/ren is/are fighting: unmeasured bilateral deafness, delayed speech, delayed development, and feeding issues

    I do apologise for missing this introductory section months back when I started posting in here!

    Andrew was 11 weeks prem, had a pre-birth bleed in his head, and then during his first year he suffered from Infantile Spasms. He now has bilateral deafness but we disagree with the audiologists as to how severe; speech delay as a result of the deafness and his development; 4-6m development delay depending on what you measure; and feeding issues - he has only just started accepting stage2 lumpy food, he refuses to finger feed.

    :wave:

    Forgot to say. He is also TINY :) He was IUGR, born weighing just 1lb 6oz. He's now 20m actual (17m corrected) but wearing size 6-9m clothing. He's well off the standard growth chart, lurking around -3SD on the low birthweight chart.
     
  18. xxClaire_24xx

    xxClaire_24xx mum of 2 gorgeous girls

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    Username: xxClaire_24xx

    Name: Claire
    Child/ren Name/s: Ellie
    My Child/ren is/are fighting: Ellie is still being tested for mild cerebal palsy, she has either DDH or Hemihypertrophy of her left leg and torticollis, slow weight gain and her body only makes up 3 of the white blood cells it needs and doesnt absorb zinc
     
  19. Adanma

    Adanma Mom to 2 lovely boys

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    User Name: Adanma
    Name: Judith

    Child/ren Name/s: Ian (6), Preston (4)
    Chid/ren DOB/s: Ian: Dec 17 2004, Preston: Jan 19 2007
    My Child/ren is/are fighting: Ian is Dx with Asperger's ADHD SPD and tic disorder NOS

    Wonderful idea!

    Adanma
     
  20. vicki.mummy

    vicki.mummy Foster Mummy to 2 boys!!!

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    Oct 28, 2010
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    User Name: vicki.mummy
    Name:Vicki

    Child/ren Name/s: Robbie
    Chid/ren DOB/s: 30/7/05
    My Child/ren is/are fighting: we are having him tested for Autism

    Any extra Info: Robbie has struggled with developmental delay for many years, since coming to live with us he has improved vastly. He starts primary 1 in September 2011 and sees a speech therapist reguarly.
     

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