Introductions of BRIGHT Discussion Members
Abel: Parents: Tracy & Abel
Abigail: Parent: Heidi
Amir: Parents: Fezia & Asger
Alissa: Parents: Matt & Leslie
Allison: Parents: Michelle & Tony
Andrew: Parents: Laura & Loren
Andy: Parents: Kristi & Bruce
Anton: Parent: Maryrose
The Bennett Family
Cameron: Parents: Sue & Dan
Dominic: Parents: Helene & Gerry
Dustin: Parent: Christiana
Elizabeth: Parent: Kimberly
Eric: Parent: Andrea
Erin: Parents: Sharon & Danny
Erin: Parents: Jennifer & Andy
Gerard: Parent:Ilse & Francis
Jessica: Parent: Karen Hopkins
Jon-Jon: Parent: Sherry
Joshua: Parent: Wendy
Justin: Parents: Amy & Rob
Kaitlyn: Parents: Jessica & Charlie
Kitty: Parent: Jane
Laura: Parent: Val
Laurel: Parents: Rochelle & Bob
LeAnne: Jessica & Mak
Leiby-Henyu
Lloyd: Parents: Steve & Wendy
Mia & Diamond: Parent: Lynn
Megan: Parents: Thad & Debra
Rene: Parents: Lisa & Paul
Samuel: Raynou & Steve
Sara: Parents: Amy & Jim
Sarah: Parent: Brandie
Sebastian: Parents: Louis & Anna
Timmy: Parent: Julia
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: donations@brightfoundation.org
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://brightfoundation.tripod.com/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.
A study using the Lokomat robotic assisted treadmill was conducted at University of Munich, Germany. The results are very exciting because they are exactly as we would have expected based on the research of BRIGHT.
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Corresponding author. Tel.: +49 89 5160 7851; fax: +49 89 5160 7745.
