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| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |

03-19-2009, 01:08 AM
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Member
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Join Date: Feb 2009
Location: Corvallis, Oregon
Posts: 264
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Missing brain structure?
Kharma just had another set of MRIs to try to diagnose the cause of her BVCP, but no cause was determined. They did, however, incidentally discover that she has no corpus collosum, which is the nerve panel that connects the two hemispheres of the brain. Have any of you ever heard of this? Do you know any of the long term effects? I've never even heard of this, and this on top of the trach is just absolutely overwhelming. She's ten months old, and developmentaly she's right on target, but its still scary 
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03-19-2009, 01:53 AM
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Join Date: Mar 2007
Location: ohio
Posts: 261
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Elijah has absent corpus collusm but he also has several other brain malformations. So I am of no help just want to offer  . I hope you find some answers.
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Amanda
Mom to James (who passed away),Mike 13, Chianne 12, Sierra 9, Alysen 6, and our miracle baby Elijah 5 years old, born with Walker Warburg syndrome, born without eyes, hearing loss, seizure disorder, g-tube,trach and completely weaned from the vent, and has been a true blessing, miracle, and fighter.
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03-19-2009, 04:54 AM
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Administrator
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Join Date: Feb 2002
Location: Grafton, MA
Posts: 4,176
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This is called "agenesis of the corpus callosum" and it's fairly common in kids with other abnormalities. (My son has a very thin corpus callosum along with his CP). This may or may not effect intelligence. Some kids function normally; it's another one of those wait-and-see things. Tough, I know  The fact that she is developing normally is a good sign though!
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Cindy - Mom to Aaron (age 19), trached for 4 years, subglottic stenosis, ADHD, learning disability, former 26 week preemie and identical twin to Eric (age 19), spastic quad CP, moderate MR, seizure disorder; Anthony (age 19), spastic quad CP, g-tube, seizure disorder, cortical vision impairment, profound MR; and Natasha (age 6) CP, cortical blindness, seizure disorder, profound MR, shunt, g-tube.
Home Page: http://www.bissells.com
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03-19-2009, 05:10 AM
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Senior Member
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Join Date: Dec 2004
Location: England
Posts: 10,932
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Some people with agenesis of the corpus callosum can be highly intelligent - in fact, there are several savants who have an absent corpus callosum. It may or may not cause delays.
Good luck
Julie
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03-19-2009, 05:46 AM
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Senior Member
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Join Date: Jan 2008
Location: Scotland
Posts: 1,374
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emily is missing her corpus callosum and her septum pellucidum. as others have said, there is an enormus spectrum of effects ranging from severe delays (physically and cognitively) to nothing detectable at all. in your teenage years i think is a point where differences may become apparent in terms of social skills etc. epilepsy is also a possibility.
emily is ahead on her cognitive milestones :-)
we see nothing in her to suggest her CC is missing.
the ACC network is an absolutely fantastic resource and they also run a listserv. if you want to know the full details of ACC i would definitely suggest that you contact them. they have tonnes of written information that they will send out to you.
it is scary  we had an MRI because of emily's HIE at birth as everyone was expecting her to be brain damaged. the MRI showed no damage at all, but the ACC. her doctors were very negative about her prognosis and yet she is doing great!
pls PM me if you want to ask any questions
x
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*clare.
mum to emily 12/02/07 (placental abruption)
APGARS 0+1 (HIE gr.2/seizures) but she MADE IT! with the determination that we still see in her every day.
Grade III SGS - emergency tracheotomy July 2007.
2 stage LTR July 09 - DECANNED 27.9.09
tracheomalacia (GONE!! Sept08)
partial agenesis of the corpus callosum
residual VSDs post-surgery but lung pressures normal (Nov08),
?septo-optic dysplasia.
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03-19-2009, 01:47 PM
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Join Date: Feb 2009
Location: Corvallis, Oregon
Posts: 264
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Thanks, once again. You guys are amazing 
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