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mi-RARE-cles: Spina Bifida, Myelomeningocele

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Monday, November 10, 2014. Spina Bifida, Myelomeningocele. Bifida is the most common permanently disabling birth defect in the United States. Spina Bifida literally means “split spine.” Spina Bifida happens when a baby is in the womb and the spinal column does not close all of the way. Myelomeningocele is the most severe form of Spina Bifida. It happens when parts of the spinal cord and nerves come through the open part of the spine. It causes nerve damage and other disabilities. To relieve the pressure ...

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mi-RARE-cles: Congenital Talipes Equinovarus (CTEV) commonly known as ”Clubfoot”

http://mi-rare-cles.blogspot.com/2014/09/congenital-talipes-equinovarus-ctev.html

Monday, September 8, 2014. Congenital Talipes Equinovarus (CTEV) commonly known as ”Clubfoot”. Clubfoot is diagnosed at birth, or in some instances, by prenatal ultrasound. It cannot be predicted or prevented. When Clubfoot is present in both feet it is called Bilateral Clubfoot. One affected foot is called Unilateral Clubfoot. Treatment Overview: 5 Phases. Correction: Gentle manipulation to align the foot in a normal position with weekly (serial) casting to allow the soft bones to set. Here, the lig...

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mi-RARE-cles: 22q11.2 Deletion Syndrome

http://mi-rare-cles.blogspot.com/2014/09/22q112-deletion-syndrome.html

Monday, September 15, 2014. Missing part of Chromosome 22…can be a random genetic mutation…first in the family…or a person that has it has a 50% chance of passing it on to their children. Gives rise to a variety of symptoms, ranging in severity. Growth, heart, kidney, spine, calcium, feeding, developmental, speech, immune issues. ETC. Needs care by a variety of specialists depending on the particular symptoms (cardiologist, immunologist, speech-language pathologist, feeding therapist, geneticist, ETC).

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mi-RARE-cles: Developmentally Cognitively Delayed

http://mi-rare-cles.blogspot.com/2014/05/developmentally-cognitively-delayed.html

Monday, May 5, 2014. 9 years ago, my daughter Grace was born at 24 weeks. She was a micro-preemie. She had a tracheostomy,ventilator, oxygen, and feeing tube. Today, she is mechanically free, but does have DCD. She is in third grade, and is developmentally delayed for her age. Grace still has induced asthma at times, due to her respiratory colds. Grace learns differently at school in her special education classes. She has goals set through her IEP plan through the school district. Follow us on facebook.

mi-rare-cles.blogspot.com

mi-RARE-cles: September 2014

http://mi-rare-cles.blogspot.com/2014_09_01_archive.html

Monday, September 15, 2014. Missing part of Chromosome 22…can be a random genetic mutation…first in the family…or a person that has it has a 50% chance of passing it on to their children. Gives rise to a variety of symptoms, ranging in severity. Growth, heart, kidney, spine, calcium, feeding, developmental, speech, immune issues. ETC. Needs care by a variety of specialists depending on the particular symptoms (cardiologist, immunologist, speech-language pathologist, feeding therapist, geneticist, ETC).

mi-rare-cles.blogspot.com

mi-RARE-cles: November 2012

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Monday, November 5, 2012. Chromosome 3p Deletion Syndrome. 3p deletion syndrome is a rare chromosome disorder characterized by the deletion of part of the short arm of chromosome 3 (3p). De Novo Interstitial Deletion on the short arm of chromosome 3 ( 3p.25.3p25.2). Rozy Kate is currently in therapy 6 sessions a week including pt/ot/and speech. She also currently takes medication to control absent, partial, and cluster seizures. Office of Rare Disease Reseach (ORDR). Upon returning to our regular pediatr...

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mi-RARE-cles: March 2014

http://mi-rare-cles.blogspot.com/2014_03_01_archive.html

Monday, March 31, 2014. My daughter was born healthy and normal. She suffered a traumatic brain injury at 2 1/2 years old, we still do not know exactly what happened that day. She is now unable to speak, walk or even sit up on her own. She has partial paralysis on the entire right side of her body. She is diagnosed with Hemiparesis, a type of cerebral palsy, and epilepsy. Https:/ www.facebook.com/groups/ParentsofChildrenwithBrainInjuries/. Http:/ www.biausa.org/. Contributed by MOM Stephanie Bradford.

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mi-RARE-cles: January 2013

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Monday, January 28, 2013. MAE - Doose Syndrome. An EEG reading of a child with MAE typically has a specific Hz pattern. It is very rare, to have a few medications control seizure activity so several medications are needed along with other treatments. The ketogenic diet has shown a great success reduction rate for many. Other treatments include VNS and/or brain surgery. Epilepsy Foundation Doose Syndrome Foundation and Dallas Childrens Medical Center. Contributed by MOM Amber Fuller. Neuromuscular - Extre...

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mi-RARE-cles: Hydrocephalus

http://mi-rare-cles.blogspot.com/2014/09/hydrocephalus.html

Monday, September 1, 2014. Tristan, our Treasure, is 11 years old. She has been diagnosed with a list of things. There are many different symptoms that Tristan has had as part of all her diagnosis’. Born with Hydrocephalus, Chronic Asthma, Pulmonary Valve Stenosis, Heart Murmur, and some other things. Tristan’s had 17 surgeries. A href="http:/ www.hydroassoc.org/" Hydrocephalus Association /a. Tristan is truly a Miracle! She is a Fighter and will Over Come these things thru Jesus Christ!