Special Needs Board Information Log

I have just updated Findlay's one above

 

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 . 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


Anyway, I hope you don't mind me being here xxxx

 

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

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

 

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.

 

Welcome daisychain! I hope you find some support here!

 

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

Hope everyones ok xx

 

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!

 

Hi!! Welcome!

 

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.

 

Welcome capel!! :wave:

 

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

 

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)

 

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

 

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

 

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!

 

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

 

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.

 

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

 

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

 

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.