Intro

June 9, 2005

Welcome !!!! Where in NC are you??

Tia

June 9, 2005

,

Welcome to the group. It sounds like you have your hands full with your two

little ones. I am sure they are the joy of your life though. I have a four

year old daughter with CHARGE syndrome. She has bilateral colobomas,

bilateral severe S-N hearing loss, swallowing problems, balance issues,

gross and fine motor delays, previously she was ventilator and trach

dependent due to tracheomalacia but has since improved and is free of the

trach and vent. She has reflux and asthma. I am questioning some OCD due

to her incessant picking of her fingers or scabs, also her schedule is very

important to her and she doesn't like a lot of change. She has had 13 +

surgeries including: trach placement, G-tube placement, PDA repair, 2 eye

surgeries, cleft lip and palate repairs, lengthening of her nose, ear tubes

placed 3 times, pyloric stenosis repair, and a Nissen.

I just joined the group a few months ago and it is so helpful. There are

people out there that know what you are dealing with on a daily basis. They

are the real experts. I have trouble getting answers from the medical

community but here some one always has a similar situation. Enjoy!!

mom to Makenna CHaRgE

-- Intro

I am a 24yr. old mother of two. ph 4 and Skyler 22mo. We live in

NC. ph has C.H.A.R.G.E., Asperger Syndrome, OCD, Oppositional

Behaviour Dosorder, ADHD. His C.H.A.R.G.E. includes right lop ear,

right facial palsy, short stature, bones in ears are fused together (he

can still hear 100% with no scientific explanations), tongue tied,

small teeth, balance problems, delayed gross and fine motor skills,

VSD, seizures, bronchiomalacia, tracheomalacia, esphogealmalacia,

atresia stenosis, sensory integration dysfunction, reflux, small

kidneys, micropenis and small testicles.

His Asperger's includes not being able to interact with other children

(he is fine with teens and adults), superior intelligence(he tests at a

7yr. old level), I believe the ADHD, OCD, and Oppositional Behaviour

Disorder are all part of Asperger's.

is an avid artist and seems to understand how everything works.

He is a happy child with an active imagination and a love for nature.

He is homeschooled by me and seems to learn by hands on.

Skyler has moderate hypotonia, and sensory integration dysfunction. I

look forward to being a part of this group.

June 9, 2005

What surprises me is that he received the " labels " so young. I think it

must be because he does not have the complicating feature of combined vision

and hearing loss, but I agree it is still part of CHARGE.

Kim

>

> ph had glasses when he was two. I had broke my leg while I was

> pregnant with Skyler and was in a wheelchair. My mother-in-law had to

> take him to his appt. She came back with a prescription for glasses.

> A year later when I was back to walking I took him, and he didn't

> need glasses. Nobody has seen any colobomas in either of his eyes. I

> still don't know why he was given glasses. He was diagnosed OCD by

> the genetics doc at two, ADHD and ODD at 3 by a psychiatrist. He was

> diagnosed with Asperger's 2 month's ago right before his 4th

> birthday. I had to call and ask the genetics doc, the ped., and the

> devlopmental ped. about Asperger. As soon as I did they all said it

> fit perfect. He had to be tested and they found he did have it.

> I believe one day we will find all these behaviours to be included

> with CHARGE and not need all the extra labels.

>

>>

>>> I am a 24yr. old mother of two. ph 4 and Skyler 22mo. We live

> in

>>> NC. ph has C.H.A.R.G.E., Asperger Syndrome, OCD, Oppositional

>>> Behaviour Dosorder, ADHD. His C.H.A.R.G.E. includes right lop ear,

>>> right facial palsy, short stature, bones in ears are fused

> together (he

>>> can still hear 100% with no scientific explanations), tongue tied,

>>> small teeth, balance problems, delayed gross and fine motor

> skills,

>>> VSD, seizures, bronchiomalacia, tracheomalacia, esphogealmalacia,

>>> atresia stenosis, sensory integration dysfunction, reflux, small

>>> kidneys, micropenis and small testicles.

>>> His Asperger's includes not being able to interact with other

> children

>>> (he is fine with teens and adults), superior intelligence(he

> tests at a

>>> 7yr. old level), I believe the ADHD, OCD, and Oppositional

> Behaviour

>>> Disorder are all part of Asperger's.

>>> is an avid artist and seems to understand how everything

> works.

>>> He is a happy child with an active imagination and a love for

> nature.

>>> He is homeschooled by me and seems to learn by hands on.

>>> Skyler has moderate hypotonia, and sensory integration

> dysfunction. I

>>> look forward to being a part of this group.

>>>

>>> Membership of this email support groups does not constitute

> membership in the

>>> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

>>> For information about the CHARGE Syndrome

>>> Foundation or to become a member (and get the newsletter),

>>> please contact marion@c... or visit

>>> the web site at http://www.chargesyndrome.org. For CHARGE

> Syndrome Canada

>>> information and membership, please visit

> http://www.chargesyndrome.ca, or

>>> email info@c...

>>> 7th International

>>> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24,

> 2005.

>>> Information will be available at www.chargesyndrome.org or by

> calling

>>> 1-.

>>>

June 9, 2005

welcome to the group---sounds like you have a wonderful child.

mom to Timmy 91/2 ChARGE, keegan 7, liam 41/2 wife to pat

Intro

>I am a 24yr. old mother of two. ph 4 and Skyler 22mo. We live in

> NC. ph has C.H.A.R.G.E., Asperger Syndrome, OCD, Oppositional

> Behaviour Dosorder, ADHD. His C.H.A.R.G.E. includes right lop ear,

> right facial palsy, short stature, bones in ears are fused together (he

> can still hear 100% with no scientific explanations), tongue tied,

> small teeth, balance problems, delayed gross and fine motor skills,

> VSD, seizures, bronchiomalacia, tracheomalacia, esphogealmalacia,

> atresia stenosis, sensory integration dysfunction, reflux, small

> kidneys, micropenis and small testicles.

> His Asperger's includes not being able to interact with other children

> (he is fine with teens and adults), superior intelligence(he tests at a

> 7yr. old level), I believe the ADHD, OCD, and Oppositional Behaviour

> Disorder are all part of Asperger's.

> is an avid artist and seems to understand how everything works.

> He is a happy child with an active imagination and a love for nature.

> He is homeschooled by me and seems to learn by hands on.

> Skyler has moderate hypotonia, and sensory integration dysfunction. I

> look forward to being a part of this group.

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca, or

> email info@....

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at www.chargesyndrome.org or by calling

> 1-.

>

January 9, 2006

Welcome Kelsie, You will love it here, we are a very active and talkative

group:)

(http://lilypie.com/)

January 9, 2006

Hello, my name is Kelsie. I had Laproscopic Gastric Bypass surgery on

Oct. 25th, 2005. So far, I've lost about 48 pounds. It wasn't an

easy journey. I had a lot of trouble with nausea and sickness and had

to stay in the hospital for nearly 2 months. I had a defibilator put

in, gallbladder taken out and 2 dilations (stretching the opening to

my stomach). But, I think I'm over the hump, I've been home for

almost 3 weeks and haven't been sick. So, now I can start enjoying

the effects of the surgery, finally!! I thought it would really help

me to join a group, and especially to be able to share with others who

understand. I look forward to getting to know you all:)

Kelsie

January 9, 2006

hi kelsie,

what a horrible experience.....be glad they removed your gallbladder now, i

just had mine removed 2 yrs after the bypass and it was no fun and i wish it

had been removed at the same time. why did you need a defibrilator? wow, 2

months is a LONG time. glad you are back home and feeling better