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#1 2blue1

Posted 23 March 2007 - 07:18 PM

Hi everyone,

Just wanting to see if we could get some accurate numbers of how many people come into this part of EB.

So even if you just lurk and don't post, could you please reply to this thread once and answer the following:

Your name: (optional you don't have to give that info if you don't want to).

Your child's diagnosis, or special needs:

The state you live in (or country):

I will go first.

Name: Anna

Child's diagnosis: Ryley has Wolf-Hirschhorn Syndrome

State: VIC

Thanks original.gif

Edited by starofamp, 23 March 2007 - 07:18 PM.

#2 Cath13

Posted 23 March 2007 - 07:32 PM

Name: Cathy

Child's diagnosis:CODY- Down syndrome, AVSD, Duodenal Atresia, congenital nystagmus, otitis media.

State: NSW

Edited by Cath13, 23 March 2007 - 09:39 PM.

#3 PMU

Posted 23 March 2007 - 07:35 PM

Name: Peta

Child's Diagnosis: Landau-Kleffner Syndrome

State: Vic

#4 madmother

Posted 23 March 2007 - 07:35 PM

Name: Tanya
Child's diagnosis: Asperger Syndrome
State: QLD

#5 haventhadenoughat6

Posted 23 March 2007 - 07:46 PM

NAME:: Kerry

CHILDS DIAGNOSIS:: T'keyah, Dandy Walker syndrome- Agnesis of the corpus callosum- Cerrelbellar vermis Hypoplasia- Hydrochephelus- developement delay- low muscle tone- stridor

CHILDS DIAGNOSIS:: Kye, Lipoma of the corpus callosum- Agnesis of the corpus callosum- Cerrelbellar Vermis Hypoplaisa- Dandy walker varient


Edited by hadenoughat6, 24 March 2007 - 07:35 PM.

#6 ~JASB~

Posted 23 March 2007 - 07:50 PM

Name:  Michaela

Diagnosis:  Adam has Total Colonic Hirschsprungs Disease

State:  Qld

#7 annie77

Posted 23 March 2007 - 08:07 PM

NAME: Annie


Charlotte has DDH (Hip Dysplasia)
She also suffers from possible Absence Seizures
Charlotte was diagnosed at 19 months old with Severe Verbal & Oral Dyspraxia


ETA: New Diagnosis!

Edited by annie77, 17 October 2007 - 01:19 PM.

#8 *Dory*

Posted 23 March 2007 - 08:31 PM

Good idea original.gif

Name: Kathi

Child Diagnosis: Down Syndrome (Matthew)

State/Territory: ACT

Edited by *Dory*, 23 March 2007 - 08:33 PM.

#9 ♥RUBES♥

Posted 23 March 2007 - 09:03 PM

Name: Rubiann

Child Diagnosis: Leslie: Pervassive Development Disorder not otherwise specified, Oppositional Defience Disorder, Conduct Disorder.

Child Diagnosis: Gordon: Stickler Syndrome

State/Territory: S.A

Good Luck, Thank You & Cheers Rubiann.

#10 Tongue~In~Cheek

Posted 23 March 2007 - 09:09 PM

Name: Wendy

Child's diagnosis: Ryan had Silent Reflux/GORD - Thankfully he has just outgrown it.  original.gif  cool.gif

State: S.A.

Edited by wendy1970, 23 March 2007 - 09:11 PM.

#11 hayleymorton

Posted 23 March 2007 - 09:12 PM

my daughter cailtan, 10 months old has:

Severe tracheobronchomalacia, Asthma, Gord, Aspirates on fluid, Blind in one eye(persistant hyperplastic primary viteous), Does not chew and chokes when swallowing.



#12 ~MakkaPakka~

Posted 23 March 2007 - 09:30 PM

Name:  Amanda-Jane

Child's Diagnosis Anja: Sacrococcygeal Teratoma, low tone in hands, hyperhydrosis in hands and feet.

Child's Diagnosis Kaeden: PDD-NOS, Sensory intergration Disorder, GORD, Bilateral Renal Reflux - Enlarged renal pelivs ®, plagiosephaly caused by torticolis.

Child's Diagnosis Lena:  Speech delay, social and behaviour delays, some sensory intergration issues.

State: QLD

Edited by ~MakkaPakka~, 11 March 2012 - 09:42 AM.

#13 triplets+1

Posted 23 March 2007 - 09:46 PM

Name: Kylie

Child's diagnosis: C has Autism with Intellectual Diss.
B and D have Speech Delays

State: WA

original.gif  Kylie

#14 Lys

Posted 23 March 2007 - 10:09 PM

Name: Lys

Child's Diagnosis: Natalie has DDH (Hip Dysplasia)

State: NSW

Edited by Lys, 23 March 2007 - 10:09 PM.

#15 ~Echolalia~

Posted 23 March 2007 - 10:37 PM

Name:  Denise

Special Needs Kids:  
14 year old boy with queried Asperger's
6 year old with severe allergies
5 year old with autism, Coeliac Disease, immune deficiency, and a few other issues

State:  SA

#16 blackcat

Posted 23 March 2007 - 10:49 PM

Name: Karen

Child's Diagnosis:  Rory has 22q11 Deletion(Velo Cardio Facial Syndrome), CHD, immune deficiency, hypotonia, talipes, development delay.

State:  SA

#17 Guest_Bindyi_*

Posted 23 March 2007 - 11:17 PM

NAME: Belinda
CHILDS DX: ASD H/F ADHD Sensory Intergration Disorder
Protein & Iron Deficiant..Asthmatic.

#18 hannahbug

Posted 23 March 2007 - 11:27 PM

Name:  Katherine
State:  QLD

Epilepsy x 2, Autism, Hypotonia, Hemangioma ( back and liver), Coeliacs, Gross Motor Delay Development, Anxiety

I have PTSD and OCD and PND(3 times)

Edited by Mumofive, 23 March 2007 - 11:26 PM.

#19 baby_number_3

Posted 24 March 2007 - 12:32 AM

Name: Erica

Child's diagnosis: Brice (11) PDD-NOS

Child's diagnosis: Mason (14weeks) Septo-Optic Dysplasia


#20 Ms*Congeniality

Posted 24 March 2007 - 01:05 AM

Name: Taryn

Child's Diagnosis: DS with speech and gross motor developmental
delay. Possible global delay.

State: WA

#21 DreamMum

Posted 24 March 2007 - 02:23 AM

Good idea


NAME: Wendy

CHILD: MEGAN (DD1) EMILY (DD2) biggrin.gif


#22 foofoo

Posted 24 March 2007 - 06:20 AM

Name:  Melissa

Child:  Liam (3 years old) - Pervassive Development Disorder - NOS

State:  Victoria

#23 ~*~mumzlilcookie~*~

Posted 24 March 2007 - 10:17 AM

NAME.. sue
CHILD .charlotte... Diagnosed with VHL . It is expected that by the time Charlotte is 10yo she will have cancer tumours all over her body. Severe developmental delay. Esophagitis. Seizures. Dysmorphic features. Milestones at 12-15 months only, only sitting and commando crawling..not walking.
NEW UPDATED: Central sleep apnoea requiring oxygen whilst sleeping. Laryngeal cleft Type 1.Unactive thyroid gland.5 lots of meds twice daily


Edited by ~*~mumzlilcookie~*~, 25 November 2009 - 06:18 PM.

#24 AngelaK

Posted 24 March 2007 - 10:19 AM


Name: Angela

Child Diagnosis: Down Syndrome (Hannah)

State/Territory: Victoria

#25 Starbuck

Posted 24 March 2007 - 11:05 AM


Child: DD#2 - Cystic Fibrosis, Tracheomalacia and asthma.

State: NSW

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