As you may not know Cameron (my friend’s 5 year old son) has been in the hospital due to a sudden onset of super refractory seizures.
A perfectly happy healthy fun loving little boy with the widest smile and brightest eyes that has a love of trains like no other is now covered from head to toe with a rash from an allergic reaction to a medicine that we cannot stop because the seizures are more dangerous than the rash, a trach, his head rapped in gauze to support the electroencephalogram (EEG) wiring, an infected lip, swollen eyes, and a frail body that has lost a tremendous amount of weight and muscle mass.
We now see a little boy in clear pain that has been unable to speak in over a month, whose eyes stare blankly, who does not have the strength or reason to smile, who uses all of his effort to squeeze our finger. He’s a fighter but the doctors are clearly at a point where Cameron has taken them into a realm of unchartered territory.
Since being admitted to the hospital he has suffered with a collapsed lung, blood clots, a tongue so swollen it was hard, dry, and fully extended outside of his mouth, swollen extremities, pancreatitis, skin lesions, kidney concerns, and loosening of teeth in addition to other things.
While Cameron has made some gains the fact remains he continues to have seizures varying in length and frequency. Today marks day 40 for us at Children’s National Hospital in Washington DC. He has received a multitude of medications and treatments as well as genetic testing, blood tests, induced coma, intubation, spinal taps, skin biopsy, mri’s, x-rays, CT scans, EEG monitoring, ultrasounds, and blood transfusions. Our team of doctors has even contacted the National Institute of Health (NIH) to no avail.
If you have any connection or specific information regarding having a media outlet(s) cover our story please contact us. We hope national attention will solicit help from doctors that are not local but have dealt with this very rare lack of response to seizure treatment. We pray that more exposure may lead to research that can help identify and cure the underlying cause.
If you do not personally know someone please pass this on to someone else that may know
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