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Abel:
Parents: Tracy & Abel (Updated 03/03)
Abel is a nine
year boy who has Spastic Quad Cerebral Palsy due to fetal distress,
meconium aspiration, asphyxia, resulting in several brain hemorrhages and
edema. He began having seizures and kidney failure on day 2. He was
intubated for 4 days and released from NICU after 10 days. His kidneys are
fine. He has a g-tube, asthma, GIRD, a subluxed left hip, cortical
blindness and seizure disorder. The asthma and seizures are under control.
Abel is a happy
boy who is intelligent. He does not speak or walk independently or use his
hands (fine motor) He has been out of school for three years. He gets
homebound schooling and daily therapy. He rides an adaptive bicycle. He
has a Hart walker and a Rifton walker a supine and prone stander. He plays
a piano keyboard daily and we are building a pool for him to swim. The
school system is going to provide him with a Dynovox and he will soon have
a power chair. He swims with the dolphins in Key Largo one week out of the
year. He started calling my name after the first week of the dolphin
therapy. Amazing!
I do not have
him on any particular program and I want to know more about how to
get him on G-therapy. I might go to the NACD for a consult. I am planning
on taking Abel to a two week intensive program at the Upledger institute
where they do Cranial Sacral Therapy combined with other disciplines. I do
give him Phosphitydaserine-complex and DMAE which has improved his
awareness and communication skills. My email address is tlcpeach@msn.com. Abel's birthday is
11/26/93. His nickname is Bubba. His Dad's name is Abel, also. His
brother, Adam, is 8 years old, healthy, born 11/08/94 (11 months
apart!)
Abigail: Parent: Heidi (Updated
02/03)
She was full-term, but went into fetal distress during
the birth and was born via C-section. She had great Apgars--9 and 10, so
initially we didn't know she had any problems. She had poor muscle
tone ("floppy"), but not enough to alarm us our or pediatrician. My
parents started questioning her development by the time she was 5 months
and by the time she was 9 months, she was still not crawling or able to
get into sitting on her own. To make a long story short--she was
evaluated and went to PT from 13-23 months; at 18 months re-evaluated and
ST & OT were added. At nearly 21 months we took her to a
developmental pediatrician who has yet to find the root cause of her
global delays. By this time she could get into sitting, pull herself
on her belly for short distances and "bunny-hop" across the room; still
hypotonic & non-verbal. The dev. ped. told us she'd probably
eventually get the motor skills and may or may not develop cognitively but
there was nothing we could do except wait to see how she develops--he
recommended continuing traditional therapy, which was PT & ST 2x's per month
and OT once every 1-3 months. My husband & I questioned how this
infrequent intervention was going to get her to where she needed to
be. We started the IAHP aspirant program in July (she was 23 months); we did that for 6 months
and in January we started a program with the Family Hope Center.
Amir: Parents: Fezia & Asger (Updated
03/03)
Hello, my name is
Fezia and my little boy Amir is a Near Drown. He fell into our neighbor’s
fish pond when he was 18 months old. Amir turned 6 last month. We do the
Brain Net Sensory stimulation programme, have done 350 HBOT, see an
Oestopath, do ST, PT and go swimming regularly. Amir also does
Hippotheraphy once a week (probably the highlight of his week) Amir has a
Gastrostomy button, however he eats nearly 90 % by mouth and is learning
to drink water from a cup. Whilst he has gained some strength in his trunk
and has full head control, he is still unable to sit. He does attempt to
wriggle around when he is on the floor (which is all of the time unless he
is doing therapy). We hope to start a cycling program with him and his
bike is being ordered from Australia. We live in Kuala Lumpur, Malaysia.
Amir's website http://www.amirs-page.cc/. Amir’s
birthday is February 4, 1997.
Alissa: Parents: Matt & Leslie (Updated
2/03)
My name is Matt Palaszynski. My wife is
Leslie. We live in Milwaukee, WI. Our daughter Alissa was born
11/01/00 with a Hypoxic Ischemic Encepholopy due to my wife having an
Amniotic Fluid Embolism. Leslie almost lost her life because of
this rare delivery complication, but luckily she managed to pull through
and eventually recover completely. Alissa is now 27 months old and is
sitting-up independently, belly crawling, starting to creep on all
fours. Her injury was mainly in the Basil Ganglia (Bilateral
Putamen) and has symptoms of mainly of
hypotonia, difficulty
swallowing, mixed tone. We are very happy with Alissa's slow but
steady progress. Our goal is for Alissa to be 100% independent and
as free from the symptoms of her original injury as possible. We are
confident that with continued diligence in addressing her development
needs, she will achieve this goal. Our email address is: M.Palaszynski@med.ge.com
Allison: Parents: Michelle & Tony (Updated 2/04)
I would like to introduce our little angel to everyone. Her name
is Allison and has been diagnosed with severe cerebral palsy. We
had a home birth which turned out to be our worst nightmare.
Allison came out without breathing on her own and was not
resuscitated until the fire dept came to our house. We were all
transported by ambulance to the hospital only to find out that she
was intubated improperly. To make a long story short the
neurologist gave us no hope so we took her off her breathing
device. By the grace of God Allison started to breathe on her own
and she was doing well. We fought with the board of directors to
bring her home two weeks later due to the fact that she was not on
any meds. Boy what a challenge that was in front of twelve woman
who thought we weren't capable of taking care of her. Allison is
now two and a half years old and is so wonderful to be around. We
all know the challenges are daily, but somehow her smile changes
all that everyday. Allison is a quad/spastic/mixed tone and
relies on equipment to help her with everything. She is such a
trooper and loves her little one year old sister. Allison has
been with Easter Seals since she was five months old. Her
therapists, (OT, PT, Swimming, Speech, Child Dev. and Music) have
been very helpful in making sure Allison has gotten a lot of
equipment to help her with daily activities. She will be
starting preschool in May and I am very nervous as to what the
Lord is going to give Allison in terms of fairness of what is
needed for her to maintain and not lose what we have had in the
past. The whole idea the school districts has of "educating" the
children with disabilities is quite maddening. We live in
California and heard about the bright foundation through a
friend. I am looking forward to reading and helping out those who
are having the challenges that we too face everyday of our lives.
Andrew: Parents:
Laura & Loren (Updated 9/03)
My name is Laura and I'm mommy to Aaron who is 4 1/2
and to Andrew who will be 3 in October. Andrew suffered a brain injury
(HIE) at birth which has resulted in spastic-quad cerebral palsy. We have
been very fortunate in that he has been quite healthy. We've had no major
illnesses, have been able to avoid the g-tube and have had no seizure
activity for more than 2 years. However, his left hip has displaced enough
that the Ortho is wanting to do an osteotomy in December, on both hips.
Andrew is limited as far as his gross and fine motor skills go. He can
roll from tummy to back, but not back to tummy. Socially Andrew seems more
on track. He is very aware of his surroundings, recognizes faces and
voices, and absolutely loves the
Teletubbies. We get both PT and OT
through the school district as well as privately. I have been very
disappointed w/ the therapists from the schools. Well, guess that's the
short version of us.
Andy: Parents: Kristi & Bruce
(Updated 2/04)
Our first
child, Andy was born on February 4, 2000. He had a shoulder dystocia
and was stuck for 7 minutes. Once he was out, he was without oxygen
for 15 minutes. His apgar scores were 0, 0, 0, 4 at 15 minutes. A
g-tube was placed at 4 weeks of age and he was able to come home
from the hospital at 4 ½ weeks old. At 11 weeks old, he had a VP
Shunt placed because he developed Hydrocephalus due to a Subdural
Hemotoma at birth. A few days later, he had to have a revision
because it was infected. Once he was finally out of the hospital at
4 months old he started receiving PT once a week. As he got older I
started asking for more therapy. While he was in the Infant Program
he received PT, OT, Speech, Music, and Water Therapy per week. His
g-tube was removed at 16 months of age.
As of today, Andy is in
preschool. He is receiving Speech, OT, PT and OT for Sensory
Integration. His diagnosis is
Mild-Moderate Mixed Tone CP, possibly Athotoid (depending on who you
talk to), Major Sensory Integration issues & Hydrocephalus. He
is Non-Verbal. He knows and uses about 50 signs and we are working
with a communication device. He
is sitting independently, cruising the furniture a bit, walks short
distances with a Kaye Walker, loves to climb on things, he has
a strong personality that can get him into trouble.
We
are very pleased with his progress and hope he will continue to gain
strength the older he gets. Our email address is mcconnell@frontiernet.net.
Anton: Parent:
Maryrose Rubenacker (Updated 2/03)
My name is Maryrose
Rubenacker and I'm the mom to a 3 1/2 yr. old named Anton. Anton born on
July 12, 1999,
suffered a severe hypoxic event-length unknown due to an unidentified
prolapsed cord. An emergy- c ensued followed by full resuscitation,
bagging, intubating and apgars of 0,1,3,4, which lead
to a fairly grave prognosis for that night, and not a bright one for his
future.
He spent a month in NICU, was intubated for only 2 days,
but was pretty much in a Phenobarb coma for the whole time there. My
little guy today is a very astute (at least I think so) but, a quiet,
passive individual, suffering from severe gross and fine motor skills and
without a true specified cp label. Even beyond that, he seems to be one of
the chosen few who got a double whammy with the severity of his
gastrointestinal system.- horrific episodes of gas and bile reflux (pain,
pain, pain), which impacts his breathing and a FTT diagnosis ,as well.
However, he is seizure free, has minor vision issues and no hearing
issues.
I label him as primarily a hypotonic quad, with mixed tone
extremities depending on the function he's placed in, and a newly emerging
thing he's got going on with his arms that appears to be athetosis-like.
To date, he has not had issues with spasticity that prohibit his function,
but that may be because he functions little (stiffness appears when he's
in a state of activity only, or upset with me). He cannot sit fully on his
own, has a ongoing love affair with ATNR, rolls inconsistently but does
attempt to creep, though very little. His head control is almost weather
dependent.
He has received consistent and intense therapy from the
time he brought home. He currently sees 3 speech therapists, one for
rib-cage mobility, one for aumentative comm, one for oral motor- and 3
PTS. one practicing integrative manual therapy (for structure only-not
function), one feldenkrais therapist and one NDT pt. He does not receive
OT (tried it, but can't find one that doesn't just shake a toy at him).
He's also done water therapy, has dabbled in Doman like patterning and
slide but nothing more extensive. My email address is: mrrubenacker@ameritech.net..
The Bennett
Family (Updated 02//03)
We
are Colleen and Craig Bennett. We live in central Texas with our
three sons, CJ (8), Will (5) and Joe (2). I am currently
pregnant with our 4th son. He was diagnosed as having had
a fetal/in-utero stroke sometime between 14 and 24 weeks gestation.
We know that approximately ½ of his right cerebellum and part of his
vermis was damaged/destroyed by the stroke. We do not know what
caused the stroke, nor do we know what to expect as far as his health and
development will be after he is born.
We
are interested in learning from and sharing with families of children who
are dealing with issues similar to what we have been told to
expect…possible problems with feeding, speech, hemiplasia, muscle tone,
coordination and strength. Thank you for accepting us into your
group. The Bennett Family
Cameron: Parents: Sue & Dan (Updated
08/03)
My name is Sue, my husband is
Dan and son Cameron. We live in San Carlos, CA (25 miles south of
San
Francisco) My son has HIE, due to a chocking accident back in
October. CJ was just a year old (10 days past his first birthday.)
CJ was diagnosed with severe encephalopathy, but just two weeks ago had
his first EEG post the hospital stay. He now has moderate-severe
encephalopathy.
Today, he can roll over
mainly from front to back and back to side. The interesting thing about CJs
injury and timing is that he remembers things, like crawling. Though
he does not have the strength or muscle coordination to crawl he sure
tries and can actually get his OT to practice with him when it is not on
the days regiment. He can also walk support by someone, but does not
have the fine motor skills to manage a walker. We have ordered him a
Lecky pronestander, which the demo he uses every week at his development
class and he loves it. He is starting to sit on his own, but his low
tone in his waist makes it hard. He has high tone in his arms and
legs. He has CVI, but with the help of Blind Babies Foundation, has made a
lot of strides. From having no recognition to today being able to see
things in mirrors and smile. He also begun looking at people when
they talk and really trying to control his environment instead of just
participate. Still unsure of if he can tell if a person is a person,
but he does distinguish between family, friends and care givers. It
is pretty cool to have your little one smile at seeing you come home from
work. It is really bad now, because he likes to watch TV. We have to
turn it off during PT and visual therapy.
CJ's hearing has not been
effected that we can tell. It seemed to be the first thing that
really came back. He was able to move his head to sound, but not to
vision for the longest time. He does have a vocabulary, but has not
mastered by any means pronunciation. He does verbalize some vowels,
m, n and g. He continues to add new
sounds to his arsenal as he
gains more control of his tongue. He has a speech therapist and
through eating and a few exercises we are working on gaining back control
and looking at some adaptive technologies as well.
Dominic: Parents: Helene and Gerry
We have 2 children: Dominic (9 1/2) and Chloe (12 years old) who is
and has been her brother's best therapist to date.
Dominic was born 10th Dec. 1993 with emergency C-section
due to my uterus rupturing during delivery. I recovered perfectly but
Dominic didn't. He suffered birth asphyxia and was put on life support for
the first 24 hrs of his life. He came home after 10 days and we were told
that we might spend the rest of our lives finding out if he'd been
affected by the ordeal.
His development was normal for the first 5 months, he could even
roll over! But then, it just stopped. He never learned to crawl, creep or
sit. He was diagnosed with CP quadriplegic at age 1. Later he was also
diagnosed as athetoid.
Being in Malaysia, the support provided and expertise available
were minimal. He had P.T. 3 times a week and it wasn't doing much. I quit
my job and started an intensive home program for him when he was 3 1/2.
The program was based on the Glenn Doman approach. We did this program for
3 1/2 years and hated every minute of it! I also did a home schooling
program for him as there was not enough hours in the day to go to school
and do exercises. He did progress though and started walking independently
at age 5.
We then moved on to Brain-Net's sensory stimulation program and
have seen good results. We are still on the program at a much reduced pace
(1 hr/day). We have also been doing Speech Therapy every week for the past
5 years, HBOT (over 400 dives), horse ridding and swimming (he can now
swim independently). We just started primary reflex therapy (too early to
say if it will help) and a brand new "Theratogs" is on the
way!!
Dominic started school part-time 2 years ago, in year 2 in a
mainstream environment. He is now fulltime in school, in year 4, and doing
well. He has no one-to-one support but needs help going up and down the
stairs and changing for P.E. Handwriting is his biggest challenge in
school and we're getting an extra large keys keyboard for him.
Our email
address is: zemog@index.com.jo.
Dustin:Parent: Christiana
(Update 09/03)
My name is
Christiana and I have three children. My middle son, Dustin is
11-yrs old (Born on 8-16-1989). At age 7, he
sustained a head injury from a baseball bat while practicing. His
injury effected his executive functions and triggered a severe psychiatric
reaction that landed him in a psychiatric hospital with hallucinations and
other thought disorder problems for 4-months when he was 8-yrs old.
Over that next year he regressed completely academically. He lost
the ability to read or write and his language and processing skills are
effected.
This past year we
started some intense remedial learning using multi-sensory reading and we
got him between an upper 1st grade, lower 2nd grade level reading and a
3rd grade level math. We are using assistive technology for writing
but we are having troubles teaching him the keyboard. So here we are
going into 6th grade and I think we are on the right track and I'm sure
our issues aren't nearly as severe as many on this list but we continue to
look for ways to help him learn. He takes Aricept which has helped
his cognitive and processing speed. So that is us, my other two children
are 14 and 5.
Elizabeth: Parent:
Kimberly (Updated 2/03)
I'm
Kimberly. My daughter, Elizabeth, is 4 ½. She was born on May 9, 1998 at
31 weeks, intubated, PDA surgically repaired, IVH. She developed infantile
spasms at 8 mos. Now has a dx of Spastic Quad CP. We've been with NACD for
about 2 1/2 years. She is also in Conductive Ed, NDT, Speech, Vojta,
Feldenkrais, Horses, Swimming, Massage and Vision Therapy. I take her to
an Osteopath for treatment whenever I get the chance. She is on an
anticonvulsant, but has been seizure free for over a year now. My email
address is: kimberly@invento.com.mx
Eric: Parent:
Andrea (Updated 2/03)
I'm
Andrea, mom to Eric who is 9 1/2 years old. Eric was born on June 15,
1993. He suffered brain damage at 5 weeks of age due to a hyponatremia
episode. He was deprived of oxygen for a short period of time so that
explains a portion of the damage, the remaining damage is attributed to
the damage caused directly from the hyponatremia episoid itself - led to a
status tonic seizure and problems intubating him. He has Cerebral Palsy
(PVL) mostly low tone but tight heel cords/ankles, CVI - no progress
here!, mental retardation (seems to understand simple things but still no
way for him to communicate), seizures (controlled pretty well with
depakote) with abnormal EEG pattern but no organized seizures present on it. He
does eat orally, and is hypersensitive to sound.
I am very interested
in the NACD program...especially to get some ideas to help in regard to
CVI. I am discouraged by everything I read about CVI that we are too late
for him to develop visual connections at this point. His vision has
essentially been static at nothing for years... on a rare occasion he will
show a spark of notice at a Christmas light or something. Vision therapy
has been stumped and essentially backed out except for "consult" to
explain
the condition. All we ever
really received was "opportunities to see" which he never was interested
in.
What does NACD
include in their program for such severe CVI?
Anyone have any success in
insurance or other assistance with NACD
expenses? Have you all had
your initial evaluations/programs in Utah?
Look forward to more
discussions/information! Erin: Parents:
Sharon & Danny Soto (Updated 08/03)
Erin was born March 1, 2001, a
healthy baby, a developing typically until she got a virus at 6.5
months. She was diagnosed with herpes encephalitis due to direct
contact with a cold sore. She was hospitalized for 4 months, during
that time she had metabolic studies, immunologic studies, MRI, Cat Scans,
EEG’s and every other test/study that could be conducted. She also
had a brain biopsy and a nissan and gtube inserted. Her primarily
diagnosis is herpes encephalitis which led to cortical vision impairment,
infantile spasms and she is globally delayed.
Erin is now 2.5 years and has
made slow progress, which we are grateful for and hope that it
continues. She receives PT, OT, Speech, Vision weekly through our
county, PT 2 times a month through our insurance, Maryland School for the
Blind comes out 2 times a month, cranial sacral therapy once a week and
acupuncture once a week, and we took her to a Neurodevelopment Specialist,
Sargent Goodchild at Active Healing, and have a home therapy program that
we are trying our best to do.
Erin can sit unsupported, get
into a crawl position, but can not push to extended arms, she rolls all
around and weight bares nicely on her legs. She has the most
beautiful smile which lights up my world.
Erin: Parents:
Jennifer & Andy (Updates 10/03)
My name is Jennifer,
my husband is Andy and my daughter is Erin. She is four now (just
turned in September!). She was born with holes in her ventricular
septum of her heart, but otherwise healthy. She was developing
normally until two weeks prior to her first birthday. We had surgery
to repair the holes in her heart and she coded the day after
surgery. The resuscitation took 40 minutes and during that time her
brain suffered the anoxic/hypoxic injury. We have just done
traditional therapy, some patterning but I don't always have the help to
do it consistently. She has made some progress---she can roll from
supine to prone, either side. She can hold her head up for 15
seconds or so. She consistently and appropriately can activate a
switch, either hand or leg. She is g-tube fed w/fundo, cortically
visually impaired, and has seizures we are trying to control. She
also has a little brother, Drew, that will be two in January. I am eager
to share my experiences with all of you and learn from you as well.
Gerard: Parent: Ilse & Francis (Updated
03/03)
My
name is Ilse Montocchio, and I am the mother of Gerard, featured on the
Bright website under case studies at
http://www.brightonline.org/main/id10_3.html
In a nutshell, he
is now 7 years old, was born with a serious heart defect and subsequently
suffered hypoxic brain injury. We have been doing an intensive program
from IAHP for 2 years and 9 months.
His progress
since I wrote the article for the BRIGHT website: his hearing has improved
a lot, he can read, he can sit in the W-sitting position, rigidity
(spasticity) had improved a lot (his left hip is luxated, but his left leg
can now be pulled manually into the correct position in the hip socket);
and best of all, he started creeping on hands and knees in September 2002.
Gerard’s birth date: 10 October
1995.
Jessica: Parent: Karen Hopkins
(Updated 2/03)
My daughter,
Jessica, was born at 37 1/2 weeks with perinatal asphyxia - the cord
was wrapped around her body 3 times. She was born by (planned)
C-section and had to be revived, then immediately started having seizures
and was put on a respirator. She was not expected to live 48 hours and now
is 4 1/2! She has severe (fluxuating) CP, CVI, Swallowing problems,
g-tube fed, non-verbal, on-ambulatory but as smart as a whip and very
determined. Her injury was primarily to the basal ganglia but had a
total of 5 areas of insult. Her neurologist put her on
Artane about three months ago and has very gradually increased the
dose due to the possible side affects and so far she is doing great.
The reason her neurologist put her on Artane was to "smooth out" her
movements. Because she goes from low tone to high tone she
tends to shoot past her target but with the Artane her accuracy has
greatly improved. Her swallowing has improved but we tend to
think that is because one of the side affects of the Artane is to dry up
her secretions. Her improvements have been very subtle and slow but
since we have noticed improvement with no bad side affects, we are still
going to continue the gradual increase. Anyone that has input from
experience would be greatly appreciated. My email address is: karebear5160@aol.com.
Jon-Jon: Parent: Sherry (Updated 2/03)
My name is Sherry. Jonathon
was born on June 22, 1998 and has severe HIE and CP among Ftt, trached,
g-tubed tonic/clonic seizures, brain shrinkage and overlap, scoliosis, CVI
plus more. He is 4.5 yrs old and now 15 pounds and 15ozs 24.5 inches long
same H.C. since birth at 32.3 c.m. I hope to get to know more parents out
there. My email address is: jonjonsma@aol.com
Joshua:Parent: Wendy (Updated
6/03)
My name is Wendy Spivey. My
husband and I are the proud parents of Joshua, age 14, Jonathan, 14, and
Julian, 15.
Joshua was born on January 8,
1989. He was the second twin. It was an awful night. I went into labor at
28 weeks and was fully dilated by the time we reached the hospital. There
was no stopping these guys.
Jonathan was born by natural
delivery. Unfortunately, I had a placenta abruptio, and the placenta
blocked Joshua inside. 25 minutes later, he was born by an emergency
c-section.
During the C-section, my heart
and breathing stopped. I had to be intubated, and didn't wake up
until the next day in intensive care. The twins had to be transported to
an NICU about 1 and 1/2 hours away. Jonathan was placed in an
oxy-hood and Joshua had to be intubated. Jonathan weighed 3 and 1/2
pounds. Joshua weighed 3 pounds.
We were later told that the
sudden burst of oxygen from the intubation had caused Joshua to have
an Interventricular hemmorage (IVH grade 3). CT scans showed Joshua
to have less than half of his brain tissue and extremely large ventricles,
which created hydrocephalus.
At age 4 mos., Joshua had a
shunt put in.
At age 18 mos., he had a
failure and had it replaced.
At age 3 years, he had
another failure and had it replaced again.
(Since that time...his shunt
has been fine.)
At age 6 months, we had a
neurosurgeon tell us we should put him in an institution. We didn't
believe a thing the Doctor said and made up our minds to help Joshua be
the best he could be. We started a journey forward and have never looked
back with any regrets.
Joshua has had PT and OT since
he was 6 months old. He had the shunts as previously mentioned. He had a
Selective Dorsal Rhyzotomy at age 2. He then learned to crawl. Before that
he had only pulled himself around in combat fashion.
He started to preschool in the
Public School system at age 3 in a physically impaired class. By the time
he got to Kindergarten, I had him in a full inclusion classroom with
a full time personal assistant, getting all his PT and OT at
school...Usually twice weekly at 45 minutes each.
Joshua is extremely verbal and
it seems as though he always has been. He began talking at an early age.
His Cerebral Palsy manifests itself in the form of physical mobility. He
has spastic diplegia. His upper body is in pretty good shape. He propels
himself independently in his wheelchair. He is very auditory. His visual
perception is lacking. He has great difficulty reading. In fact, he’s in
8th grade and reads on a grade equivalent of about 1.5. His
listening comprehension and ability to formulate answers is on grade
level.
I have fought the system many
times….Joshua is presently receiving 5 hours per week of PT and 2 hours
per week of OT. This is a battle that will continue. The school is
presently making us go through re-evaluations, IEP meetings with their
lawyer, etc. etc.
Joshua has had BOTOX, attended
Euromed twice (Now he's learning to walk with crutches), and HBOT,
briefly. I would be happy to discuss these ventures with anyone who is
interested.
Justin:
Parents: Amy & Rob (Updated 2/04)
Justin was born on
8/20/02 with the cord wrapped around his neck 3 times. He was not
breathing when he was born and required resuscitation. His APGAR
scores were 1,3,6,7 and the neonatologist initially felt that the
hypoxic
ischemic insult he suffered was mild and that he would be fine. The
neonatologist became less confident about Justin's prognosis when,
after removing his vent at 1 week, Justin was given a bottle and
would not take it. Justin was in the hospital for a month and most
of the time was spent trying to get him to orally feed. During that
time he was diagnosed with acid reflux. We brought him home with an
ng-tube and immediately started working on the reflux and feeding
issues. The reflux got so bad that he had a Nissen Fundoplication
at 7 months. This worked out excellent and allowed him to switch
from ng-tube to g-tube also. Justin had an MRI at 4 months that
showed mild damage to the basal ganglia. As a result of his injury,
Justin's motor skills are extremely delayed. As of now (2/6/04) he
cannot sit and when put in a sitting position often stiffens up to
get out of that position. He does not use his arms or hands
purposefully. He has had no seizures to date. Justin's head
control has improved a great deal over the last couple of months and
is pretty good at this point. Justin has PT, OT, and ST at home.
He is also in a program at a nearby therapy facility and has
recently started aqua-therapy. He also gets dad's therapy program
on
the weekends. Throughout all of this Justin has turned out to be a
sweet little boy with a wonderful disposition. He, along with his
big sister Alexandra, bring a great deal of joy to our lives. Our
email address is
amyrichards@charter.net.
Kaitlyn:
Parents: Jessica & Charlie (Updated 09/03)
Hi my name is Jessica and my daughter's name is Kaitlyn. Kaitlyn is 9
months old. She has HIE, CVI, Spastic Quad CP, Microcephaly, Failure to
Thrive, and Global Developmental Delays. Her injury was caused by
perinatal asphyxia due to doctor error. Kaitlyn as of now has Physical
Therapy and Occupational Therapy through the medical model. She sees an
OT, PT, Visual Therapist, and Early Education Teacher through the school
district. She has a wide variety of doctors...a neurologist, physiatrist,
ophthalmologist, orthopedic surgeon, gastroenterologist...I think that
covers it. When she started therapy, we worked mostly on getting her to
respond because for the first few months of her life she didn't do much
but sleep. Now most of her Physical Therapy is range of motion. I like her
therapist and the work she does. She recommended getting Kaitlyn a
stroller/seating system which is helping. It is the Kimba. Kaitlyn
recently began work with her OT and that is more working with her
Vestibular system. I haven't had any problems thus far regarding the
therapies they are doing. I ask lots of questions and research a lot. My
email address is: jess_of_the_lake@hotmail.com.
Kitty: Parent: Jane (Updated 2/03)
My
name is Jane and I have a 14 month old daughter called Kitty who was born
on November 2, 2001. We live in the UK.
Kitty has athetoid CP, with the emphasis being
mainly on feeding difficulties, exacerbated by reflux. Kitty has a
g-tube/gastrostomy, depending on what side of the Atlantic you are! Kitty can
sit up with a little support round her hips and can stand when her hands
are help (for a short time). We have been fortunate in that Kitty has not
suffered seizures and her cognitive abilities are well on
track.
I have been reading some past posts on this
site and a couple of children (particularly Andy and Alissa) sound very
similar indeed to Kitty. Kitty has the daytime snoring - her family
nickname is 'snuffles' - but this is caused by pooling her secretions, we
have
been told. Kitty also had
a normal MRI - or rather 'no abnormalities seen' - but I have been led to
believe that this is often the case in tiny babies when the problem is in
the basal ganglia. Kitty's apgars were 7 and 9 and her cord pH was 7.28. I
am pretty convinced that the problem occurred in the last week or two of
my pregnancy when she went from being a very responsive fetus to suddenly
not. I then swelled up and showed mild signs of pre-eclampsia (though not
enough to do anything about apparently). I went into induced labor
following rupturing of my membranes and there was a lot of meconuim in my
waters and, during the 23-hour labor, Kitty suffered from 'decelerations
with slow recovery', but again nothing was done. She had not engaged at
all when I was induced, was facing the wrong way round and was finally
delivered after two hours of pushing with the 'help' of two ventouse
suctions, one on the back of her head and one on her shoulder. As she had
not engaged properly, she was still curled up and so came out back of the
head and shoulders first. And her cord was wrapped round her neck. So ...
put it all together and it is not really surprising really that she has
the problems that she has.
Kitty was born with a 'chest infection', but
has since not had an aspiration pneumonia. Following a swallow-study six
months ago when Kitty screamed throughout (and aspirated without even
passing go!) we
were told not
to give her any more oral feeds. Kitty had been doing fairly well with
oral feeding up to that point, but to our great regret, we took the advice
of the professionals. A big lesson learnt
there.
Kitty has had tremendous oral aversion which
she is just starting to get over now (with the help of an electric
toothbrush of all things!). That was due to inserting NG tubes sometimes
up to 5 times a day as
she
would strain, pull or vomit them out. We also had to carry out a
LOT of
oro-pharyngeal suction for the first three months of her life. At this
stage she will tolerate a dummy/pacifier in her mouth for short periods of
time - sometimes I even tape it in (don't worry I keep a close watch!) -
and that helps a lot.
Anyway, treatment wise, we have looked at all
sorts for Kitty and have finally settled on Conductive Education (she has
a place in a school starting next week) and g-therapy which just seems to
make sense to us as giving her brain that 'helping hand' that it
needs.
I have lots of tips
and suggestions to share and will post as they come to
me!
I would love to
exchange experiences with parents of similar children, in my experience
FAR, FAR more valuable that anything any of the medics have come up with
for us. My email address is:
baker_jane@yahoo.co.uk.
Laura: Parent: Val (Updated
03/03)
Laura's date of birth is 7/24/84.
She was diagnosis cerebral palsy spastic quadriplegia. Gestation 29 weeks.
Weight at birth 1.7 kilos. Apgar score 6. Laura suffered from Respiratory
Distress Syndrome. She was tube fed for the first 5 weeks. Preference in
using left side of her body. She has had no surgeries. Previous therapies
tried Conductive Education between ages of 4 years until 12 years when
Laura started G-Therapy. 75 sessions of HBOT therapy. The Hart walker from
ages 9 until 12 years. Physiotherapy and rigid and flexible splints.
Currently 6 years on G-Therapy using a Kaye-walker. Difficult periods have
been tiredness due we feel to changes in her metabolism and changes in
both gross and fine motor control. At certain times of change we can
experience extra high tone due Laura says to a change happening. Later
this has been followed by an influx of new feelings. Laura tells me that
she can feel it stretching something when this has happened. We have
experienced also occasional aches. Other than this, no bad effects.
Laura seemed to go back to basics when she started on G-Therapy. She
needed to crawl for 4 years. Previously this had been completely
impossible; she had always fallen to the right, not even being able to
hold the position. We feel that her spasticity is gradually
decreasing. We are noticing much more flexibility in the right foot.
We feel also that the crawling has helped decrease spasticity. Laura has
also experienced many comfortable cracks in her joints all over her body
since taking G-Therapy, this may also be helping. Her page on the
G-Therapy site with recent photos is:www.g-therapy.org/cslaura.htm
Laura’s Email
I started G-therapy in January 1997 at the age of 12, I am now 18.
I have Cerebral Palsy spastic quadriplegia. I have tried several other
therapies, including Conductive Education, splints, orthotic walkers and
oxygen therapy, among others. G-therapy was the first alternative
treatment I've tried. It all started when I noticed a difference in my
right hand very soon after taking the medicine. My fine motor control kept
improving. I also found that when I got off the chair I didn't feel stiff,
panic and fall backwards like I did normally. As my limbs began to
lose the stiffness they began to crack and afterwards they felt more
comfortable. Later I started to get up on my hands and knees several
times, and crawl slowly. I felt I needed to do this because it
made my whole body feel less tight, particularly my hips,
and strengthen my body throughout. It took me a long time before my
body was ready to go on and do more walking.
Before G-therapy I couldn't put my right heel flat, generally
now it goes down with ease and makes Kaye walking a lot easier. Recently I
can feel my knees getting looser and my hamstrings have ached and I can
feel them stretching. This process has been vital for my whole body as the
stiffness in me gradually decreases. Although my physical changes
have been slow, because I was nearly a teenager when I started G-therapy,
I have been consistently aware of changes in my body. I have had no
adverse effects from G-therapy whatsoever.
Though I attended mainstream school I was withdrawn from secondary
school due to the fact I was spending a lot of time in a wheelchair and
physically I deteriorated. I was educated at home so I could concentrate
more on my physical side. Math was the one subject I couldn't understand,
which is common in cerebral palsy, after G-therapy it was far easier for
me to comprehend. I feel it is important to work on my improvements
physically, while I'm quite young. I would like to return to my education
in the future.
Laurel: Parents: Rochelle &
Bob (Updated 2/04)
My name's Rochelle Garwood, and my husband Bob and I
have a little girl named Laurel who was born 11/11/00. Laurel suffered a
hypoxic incident around the time of her birth (nobody is exactly sure
when) and is categorized as having mild to moderate hypoxic ischemic
encephalopathy. Secondary to that, she has spastic quad CP, cortical
vision impairment, has had infantile spasms (about 2 years seizure-free at
this point), and is fed by g-tube. Laurel still doesn't quite sit independently,
crawl, or talk, but she keeps edging incrementally closer to
those things and she seems to
understand a great deal. We have done craniosacral therapy, NACD (National
Association for Child Development), and Feldenkrais with her as well as
the standard PT, OT, and ST and are always interested in learning more
about other treatment options. My
email address is: rochelle@rochelle.org.
LeAnne: Parents:
Jessica & Mak (Updated 03/03)
:LeAnne was born on
September 8, 1999 with Lissencephaly Type I Incomplete ;
macrocephaly as well. My email address is icebox@pacific.net.sg.
Leiby-Henyu (Updated
03/03)
Hi! My
name is Henyu, I'm new in this group, Have been a member of
the CB list for quite some time and enjoyed it. My
son, Leiby is 7 ½, DS. He's been on program on and off for 6 years. We
were on the intensive at IAHP for 2 years. He reads fluently in 3
languages. He is highly intelligent {like most kids on program}, and very
bright.
Right now we are doing a program
of creeping, masking, running and braciation, of course an academic
program. Right now my biggest concern is establishing complete dominance.
He is right dominant in everything
but his eyes, He has about
150/20 vision in his rt. eye, and about 60/20 in his left. Do I go right
or left??? The laterality problem is causing many behavior problems that
he didn't have. Good luck to all parents and children.
Lloyd: Parents: Steve & Wendy (Updated 2/03)
"Croeso y
Cymru"
Means "Welcome to North
Wales", which is where Lloyd and his mum & dad Steve & Wendy live.
Lloyd was born 2001:4:30. At 2/3 months dad
noticed that his head circumference was falling behind the charts, though
his height and weight were growing fine. Now 20 months, he is healthy and
feeds well, but definitely delayed. Sits, rolls, maybe about to crawl,
takes weight on legs but can't balance unless hands held. Does not
show interest in toys, but
holds his bottle; mainly with left hand.
MRI showed no brain malformation; just small.
HC now 44cm. Brainstem hearing and vision tests OK. CVI - ??. Does not
talk or make many noises, but alert and responsive. No seizures as
normally understood, but some momentary head drops which may be atonic or
"reverse myclonic". Tends to constipation, but not to the extent of being
a big problem. All in all, he's a nice little fellow. We get
PT/OT/ST as part of the UK National Health Service. Not tried any
alternatives yet except for homeopathy to humor a good friend who is a
homeopathic doctor. I can
see
no scope for pills with nothing in them to do Lloyd any harm - nor can she
convince me they can do any good.
We are thinking of trying Conductive Education
in Spring. Our email address is: stephen_l_phillips@talk21.com
Mia &
Diamond:Parent: Lynn (Update 09/03)
My name is Lynn and I am the parent of two daughters
with CP, ages 6 and 10. We adopted them in 2000. The oldest
child went into cardiac arrest due to dehydration at about 3 months and
the younger child vomited and aspirated on a bottle also at about 3
months. The therapies that we practice are integrative manual
therapy, HBOT and accupncture. I am interested in hearing from
someone who has done neurofeedback for CP. Mia's birthday is on July 22nd
and Diamond's birthday is on February 19th.
My email address is project1116@hotmail.com.
 Megan:
Parents: Thad & Debra (updated 11/03)
This
is Megan. She suffered a severe TBI with hypoxic injury in a motor
vehicle accident on
June 26th, 2003
. She was almost 7
months old at the
time of her injury. She continues to progress a
bit each day. Currently
she receives daily traditional therapies (OT, PT, SLT, Dev T)
in our home
through the early intervention program. Megan has
cerebral palsy(non-specific) and global developmental delays as a result of her
injuries.
She was in a pentobarbital induced coma for almost three
weeks and spent a
total of eight weeks in the hospital after her
accident. She has a G-tube
which we currently use for medications only, and as insurance
to prevent
dehydration if she becomes ill. She suffered injury to her
pituitary gland which has resulted in diabetes insipidus, or "water
diabetes", and a need for on-going monitoring of other pituitary functions
such as thyroid and growth hormones. Megan has also had simple
partial seizures diagnosed via EEG, so is on anti-convulsive meds. Megan
has recently gotten her smile back and has started to giggle and laugh on
occasion. She is hypertonic in her left arm and hypotonic in her trunk,
but her tone continues to improve.
She is trying to crawl but has difficulty because of the high
tone in her left arm. She has recently
started to babble and make increasing attempts to talk and communicate.
For the first two months after her injury she suffered from severe CVI which
appears to have improved greatly as has her cognitive function. She
responds appropriately to her name and to familiar voices, faces, and a limited number of vocabulary
words. She has a very strong gag reflex and we continue to work with her
to improve her tolerance of varied solid food textures.
Megan lives at home in Indianapolis,
Indiana
with her dad and I, Thad and Debra. My email address is DSarkine@reillyind.com
Rene: Parents: Lisa &
Paul (Updated 2/03)
I am Lisa
Davenport, wife to Paul and mother of three children: Paul, 4 years, Jenna
7 months, and Rene, 6 years. We are from Apex, North Carolina.
My daughter, Rene Davenport was diagnosed at 15 months old with central
hypotonia, bilateral esotropia, and developmental delay. At that
time, an MRI of the brain showed that she had absence of the posterior
portion of the corpus callosum, as well as Periventricular
Leucomalacia*. At 6
years of age, she has severe speech delay, hyperactivity, and below
average motor coordination. Our email address is: lisa-davenport@nc.rr.com
*Brain injury near the
ventricles of the brain http://www.pediatrics.wisc.edu/childrenshosp/parents_of_preemies/pvl.html
Samuel:
Parents: Raynou & Steve Terry (Updated 03/03)
Samuel is
my eldest son out of two sons. He has Cerebral Palsy. We live in U.K. Sam
was born 10 weeks early following premature rupture of membrane and loss
of amniotic fluid some weeks earlier. He was oxygen dependant for 6
months. His birthday is 12/14/96.
Sara: Parents: Amy
& Jim (Updated 2/03)
My name is Amy Young and my
husband is Jim. We are the parents of Sara who was born on June 8,
1999 (and Ryan). Sara had a hypoxic injury during delivery and is
diagnosed as dystonic quad CP (moderate to severe on scale). Sara is
3.5 and began pre-school this year. Her physical limitations have
not allowed her walk independently (she uses a gait trainer for short
distance) or speak. She is G-tube fed and has some gastric issues as
well. She can not sit up but has begun rolling (when she feels like
it). Her happy, outgoing personality shines and she is very creative
in expressing her needs (everyone says her eyes say it all and they
do!). She has had the traditional PT, OT, ST, Aug. Communication and
has made minimal gains physically but major gains cognitively. Even
with her 'decreased' communication she scores at or above developmental on
all pysh and cognitive tests. Hippo-therapy has been wonderful for
her and I can see the difference in head control and trunk support in the
short 6 months she has been participating. We go to Ability Camp in
Feb for HBOT and Conductive Ed. We feel we are realistic in our
expected outcomes....Our email address is ayoung@lowell.k12.ma.us
Sarah: Parent: Brandie
(Updated 09/03)
My name is Brandie Carboni mother of 9 month old
Sarah born on December 28, 2002. No one knows exactly what went wrong with
her. Her heart beat when up when it was suppose to and down when
it was suppose to. I had a great labor no complaints. No one knew that
there was anything wrong with Sarah until they cut the cord and she did
not breath on her own. Around 11:00 that night she began to have seizures,
they made the call to air lift her to Omaha NE. About 3 hours from where I
delivered. We did not know if she would live or die. There
we found out that she had suffered a brain injury. We also found out that
she had lost her suck, swallow, and gag reflex. It was a long and
hard time for us. This was our first child we were suppose to have the
perfect child but something went wrong and no one knows what. We did
find out that Sarah had tied her cord in a true tight knot and then
wrapped it around her neck. Many doctors have told us that we better be
thankful that she is still alive because many of the babies die. Sarah
spent a month at children's. When we left we felt like the
doctors were thinking I hope you take your vegetable home and enjoy
her because she will never do anything. She was home for 6 days and but
back in the hospital for a common cold she was there for 6 days and then
got to come home again it took her about 2 weeks to recoup from this.
She has been home ever since. Sarah has therapy 5 days a week OT, PT
,Speech. But like I say she has therapy 24 hours a day and 7 days a week
it is better to teach them the right way now instead of having to break a
bad habit and teaching them how to do it the right way. Besides Sarah
thinks it is just playing with her. :-) She is the love of our life and I
will always be behind her and she will be all that she can be and wants to
be. She has proven her doctors wrong many of times and she will continues
to do so. Our email address is BBourgoyne@alltel.net.
Sebastian: Parents: Louis & Anna Selo (Updated 2/03)
Let me introduce
myself. I live in London, England and have a severely disabled 11 year old
son, Sebastian who was born November 27, 1991.
Unfortunately, like many disabled children
Sebastian’s story is long and complex. So I will try to be
precise.
Sebastian, who has
a healthy twin sister, was born with an extremely rare brain tumor called
a hypothalamic hamartoma. As a result Sebastian has suffered from seizures
since the day he was born. Starting with gelastic (laughing) seizures,
they have evolved into generalized tonic/clonic seizures.
He also suffers from
severe learning and behavioral difficulties and his chances of leading any
form of independent life are non-existent.
If that was not enough in 1996 Sebastian
suffered a stroke, as a result of an aborted operation to remove part of
the tumor. This has left him paralyzed on his left side and with optic
nerve damage.
In 2001 we
took Sebastian to Australia and had the tumor
completely removed by a neurosurgeon who specializes in successfully
remove this type of tumor. We heard about this surgery through a wonderful
Internet support group (HHUGS) for children with this tumor.
Although Sebastian’s well being and cognitive
skills have improved since this operation, he continues to suffer from
seizures (on average 5 a week, lasting up to 30
minutes).
I have been very
interested in and grateful for the excellent work Matt has been doing by
identifying all the medical resources and research on brain injury. I
believe in the power of Internet collaboration in moving forward the
frontiers of medical knowledge and have already experienced it in a big
way with the HHUGS group.
On a personal level I am interested in any
leads that can help Sebastian with:
- reducing/abating his seizure
activity
-
enhancing/”switching-on” his learning abilities
- reducing/reversing his left sided
paralysis.
I appreciate
that this is a very tall and almost impossible order, but any help, no
matter how small, will be truly appreciated.
Over 11 long and difficult years my wife, Anna
and myself have tried many therapies/treatments, both conventional and
alternative, that have and have not helped Sebastian to varying degrees.
We are more than happy to share our experiences and insights. Our email is
louis@selo.fsnet.co.uk
Timmy: Parent: Julia (Updated 2/03)
My
name is Julia Lang. I have four children. Chris 19, Gemma
16, Rachel 10 and Timmy 7 /8months. Date of birth: 27 May 1995. Timmy has
cerebral palsy spastic quadriplegia. We live in the UK in a small town
near Oxford.
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