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Little Boy’s Heroic Battle with SJS Thought to be Induced by Medication

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Strood, Medway, UKThe parents of a seven-year-old boy from South East England who has been fighting for his life since December with Stevens Johnson Syndrome have said they believe medication triggered the horrid condition that has put little Oakley Orange’s life at risk. They have yet to identify the medication. However, Zithromax is one medication that has been linked to Zithromax Stevens Johnson Syndrome and Oakley’s battle with SJS is representative of just what can happen when the debilitating skin condition takes hold.

Zithromax (azithromycin) was linked to two patients back in 2006, and is thought to carry a small risk for a condition that starts - as SJS often does - with a Zithromax rash. The US Food and Drug Administration (FDA) had a more recent bone to pick with Zithromax manufacturer Pfizer when, in 2012, it took Pfizer to task for not being quite upfront enough in a brochure advertising Zmax, an extended-release version of Zithromax, with regard to the potential severity of such Zithromax reactions.

Little Oakley Orange’s story is a testament to that severity, and just how dangerous and devastating Stevens Johnson Syndrome can be.

As chronicled in KentOnline (1/11/14), Oakley developed a rash in early December after taking a prescribed medication for 12 days. Within 24 hours, according to his parents, their son quickly became unrecognizable. Blisters the size of golf balls began to form, and before long entire lengths of skin - the upper dermas - began to slough away.

Even worse, according to the report, was the fact that Oakley’s SJS quickly degenerated to Toxic Epidermal Necrolysis, or TENS, the most serious form of Stevens Johnson Syndrome. A patient is thought to suffer from TENS when 30 percent or more of the upper layer of skin has been lost.

In Oakley’s case, it was 100 percent skin loss. The boy was given just a 65 percent chance of survival. At one point, said his mother Lorraine, they thought to have lost him “when his temperature plummeted and he was diagnosed with hypothermia. But the doctors have been able to warm him up. After Friday I think he can fight through anything.

“It is the most horrific thing for a parent to have to see their child suffer in the way Oakley has,” Lorraine Orange told KentOnline.

The good news beyond the tremendous suffering experienced by the young boy, who hails from Strood, is that he has indeed survived and is slowly getting better. In the hospital since December 5 - and having spent much of that time in a burn unit on a ventilator - Oakley is rallying, and an online effort is helping to raise funds for the family to help with medical bills and expenses.

“I want to educate as many people as I can about SJS,” Lorraine Orange told KentOnline. “This can happen with any medication, not just what Oakley was taking. You need to read the leaflet and make sure your child is not sensitive to anything.”

One must also make sure the leaflet is sufficiently thorough in divesting the necessary information about risks, something that the FDA said didn’t happen with the Zmax leaflet by way of its 2012 communication with Pfizer. The risks for Zithromax SJS are too compelling to ignore…

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READER COMMENTS

Posted by

on
Hi there I am Oakleys Daddy, Steven Orange. If anyone is
Interested in reading more about Oakley, we have a Facebook page setup by a friend that has photos of his condition and Lorraine, my wife updates it twice a day with details on how Our special little hero is getting on :-) The page name is OAKLEY DONATION PAGE. Oakley currently has over 2000 people tracking his progress and chatting with us which has helped a great deal in keeping us sane at a time that would otherwise be very lonely and very very scary. :'-( There is also a Twitter page named YOUNGOAKLEY13 the 13 denoted the year, not his age :-) Our little fighter is only 7 yrs old.

Best wishes

The Orange Family.

His donation page you dont have to donate too. Feel free to join and follow his progress. The Donation side is something our friend has organised in the hope that Oakley could end up going on a Holiday of a lifetime to See Mickey Mouse ;-) because he almost died twice and he's going to lose part of his toes on his right foot and has to be circumcised due to foreskin damage. He also lost his finger and toe nails and his hair :'( Fortunately his eyesight seems to have survived the journey :-)

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