Hello, My son has an existing IEP for a visual disability, he was also diagnosed with a very rare complex disease/disorder called Mitochondrial disease when he was very young. Children with this disorder cannot tolerate nor fully recover from the effects of metabolic/physical stressors from numerous exposures, especially those infections that normal childhood viruses/fever/infections cause. In fact, from contracting multiple stressors like fever/virus/infections, children with Mito/metabolic disorders will silently begin to have internal organ dysfunction, with slow organ deterioration and then at worst, multi-organ failure, causing death, if not managed properly.
In the last 2 months my son contracted multiple illness/viruses in his classroom, he developed intermittent, chronic fever lasting for weeks which required numerous visits the pediatrician. This same pediatrician did not seemingly have serious concerns, he did not order any lab work or any diagnostic work done, he did not properly address my sons unusual fever that would not subside for about 2-3 weeks, even after he prescribed 2 different types and rounds of ABT. My son missed many days of school this entire time. Finally, in frustration and desperation, I took my son to the ER when his condition manifested into fever with other abnormal symptoms/complications of sudden, severe onset headache and severe nausea. Thankfully, the ER physician ordered labs and a CT brain. Now, based on the ER physicians actions, its been discovered that my son now has a new neurological medical complication in addition to discovering abnormal blood values reflecting certain organ damage. Due to these results, my son now has appts for genetics evaluations and neurosurgery. I will not send my son back to a public school and large classroom full of healthy children where he can easily contract normal childhood viruses again which can further worsen and deteriorate the functions of his primary internal organs because of the underlying diagnosis of Mitochondrial disease.
Finally, I asked the same pediatrician, who is aware of the Mitochondrial disease history, to consent for my son to have the school provide homebound teaching for him while we proceed with the numerous medical appts/evaluations so these expert physicians can specifically identify his complex medical needs that are specific to patients with Mitochondrial disease/and the care and management he deserves and requires to ensure no further severe/fatal injury or damage occurs to his internal organs.
The pediatrician I asked DENIED my request for my sons homebound teaching. I really need legal help and/or advice here!!!! Thank you for caring enough to read. Julie
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