Special Needs Board Information Log

[Deb&Matilda]

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

 

[Deb&Matilda]

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

 

[Tegans Mama]

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)

 

[Poloma]

Lovely Idea Guys xXx

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

 

[1st_baby]

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

 

[JASMAK]

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

 

[Emmea12uk]

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:

 

[massacubano]

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:

 

[who's_mummy]

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:

 

[samfam]

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.

 

[Lyns]

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.

 

[Miss_Oblivion]

user name. miss_oblivion
name: wendy

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

 

[Nikkinoonoo]

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.

 

[bex]

User name:Bex
Name:Rebecca
Child:Niamh Daisy
DOB:November 2008
My child hasierre Robin Sequence

 

[hotsexymum]

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

 

[2bmum]

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.

 

[Emmea12uk]

Welcome

 

[Lottie86]

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!)

 

[Emmea12uk]

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!

 

[baby.love]

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