DIAGNOSES

Here is a list of the various chronic diagnoses that Caden has been diagnosed with since birth:

Grade 3 Intraventricular Hemorrhage
Periventricular Leukomalacia
Dysautonomia
Bronchopulmonary Dysplasia
GERD
Intestinal Motility Disorder
Chronic vomiting
Constipation
Myoclonus
Seizure Disorder
Spastic Quadriplegic Cerebral Palsy
Platelet Dysfunction Disorder
Capillary Fragility
Ehlers-Danlos Hypermobility
Atlantoaxial Instability
Elevated IgE levels
Postural Orthostatic Tachycardia Syndrome
Cortical Visual Impairment
Hypokinisia/Bradykinisia
Congenital Vertical Talus
Hydrocephalus
High Blood Pressure
Tachycardia
Heart Murmur
Language disorder



3 comments:

  1. Hi, Caden's case reminds me somewhat of what my younger brother Charlie went through when he was younger. He also has EDS, POTS, Hydrocephalus, a heart murmur, a blood/platelet dysfunction, as well as learning and developmental disabilities. He is now 24, but when he was Caden's age he was also having seizures. Most recently, he had surgery for Cranio-cervical instability, that was causing him severe myoclonic seizures. He had genetic testing done, and was diagnosed also with 6q.27-deletion syndrome, and I wonder if maybe Caden should be tested for that if he hasn't already. Here is a link for info about the syndrome if you are interested, as well as a link to my brother's page that has chronicled his journey with EDS and his surgery (as well as my own for Atlanto-axial instability). I hope you can find the help you need!

    http://www.rarechromo.org/information/Chromosome%20%206/6q%20deletions%20from%206q26%20and%206q27%20FTNP.pdf

    https://www.facebook.com/CharliesFightToBeUpright
    Hugs,
    Jess

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  2. Has he been tested for a mitochondrial deficiency? He's a real sweetie. :)

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  3. HI there,

    Have you thought about referring Caden to the Make-A-Wish Foundation of New Jersey so that he could have his wish granted? They work with children who have life-threatening medical conditions between the ages of 2 1/2 and 18! It sounds like Caden can really benefit from the magic of a wish!!

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